Coordinating center for rare and undiagnosed diseases

The Coordinating Center for Rare and Undiagnosed Diseases (CCRUD) at the Hospital of Lithuanian University of Health Sciences Kauno klinikos (Hospital) has been established in 2012 when the Hospital was nominated as one of the two tertiary centres in Lithuania responsible for the implementation of the Lithuanian National Plan on the Activities Related to Rare Diseases, developed according to the requirements set by European Commission (COUNCIL RECOMMENDATION of 8 June 2009 on an action in the field of rare diseases). The Hospital has been registered as a partner of ORPHANET.
CCRUD takes part in organizing and coordination of all activities in the field of rare diseases at the Hospital level in order to ensure qualified multidisciplinary healthcare services for patients with suspected or diagnosed rare disorders. The staff fo the CCRUD provides consultations for medical professionals and patients on the organizational issues of healthcare for rare disease patients (contacts are provided on the Hospital website). CCRUD functions in close collaboration with Lithuanian University of Health Sciences, also represents the Hospital at national and international level. 
All clinical departments at the Hospital are providing services for children or adults with rare disorders as this a tertiary centre where most of complicated or undiagnosed cases are concentrated. In addition, 25 functional centers for groups of specific rare diseases have been established in accordance with special interests and experiences of the dedicated Hospital staff (see below). This allows a more structured approach to certain groups of rare diseases in providing comprehensive multidisplinary care, scientific research, education of professionals, patients and community, collaboration at national and international level, etc. 
Five rare disease centres take care of pediatric rare diseases,  eight centres deal with adult patients, and the rest eleven cover both pediatric and adult patient populations. Close collaboration between pediatric and adult specialists allows smooth transition of childen with rare disorders from childhood to adult healthcare.

Since 2017, the Hospital of Lithuanian University of Health Sciences Kauno klinikos has received the European Reference Network membership the following different medical fields:  EURACAN (European Network for Rare Adult Solid Cancer), Endo-ERN (Rare Endocrine Conditions), ERN-EYE (Rare Eye Diseases), ERN-SKIN (Rare Skin Diseases, ERN RARE LIVER (Rare Liver Diseases), ERN RITA (Primary Immunodeficiency, Autoinflammatory and Autoimmune Diseases), ERN LUNG (Rare Respiratory Diseases), ERN BOND (Bone Rare Diseases), ERN GUARD HEART (Rare and Low Prevalence Complex Diseases of the Heart), ERN ERNICA (rare Iherited and Congenital (digestive and gastrointestinal) Anomalies), ERN EpiCARE (Rare and Complex Epilepsies), ERN EURO-NMD (Rare neuromuscular diseases), ERN ReCONNET (Rare and Complex Connective Tissue and Musculoskeletal Diseases).
The Hospital of Lithuanian University of Health Sciences Kauno klinikos is represented at the national level by its specialists in different rare-disease-related regular commissions (Coordination Commission related to the implementation of the National plan on Activities Related to Rare Diseases, Commission on Reimbursement of Treatment for Very Rare Diseases) and  working groups (e.g., legislation on treatment reimbursement for certain rare diseases, rehabilitation, handicap status, etc.)
Collaboration with different patient organisations is taking place, by organizing joint activities (conferences, disease-specific days, publications). In collaboration with a non-governmental Association of children with rare disorders, consultations for families of children with rare disorders have been implemented at the Hospital.
International Rare Disease Day is being celebrated every year by organizing a conference for medical professionals and patients, supported by broad campaign on rare diseases via different media sources. The information on this event is always announced in the EURORDIS website, and the EURORDIS-provided video clip translated to Lithuanian is spread around.
Information on rare diseases for patients, families and professionals is provided in the Patient portal or on the websites of specific Hospital-based rare disease centres (in Lithuanian).
The expanding diagnostic possibilities of rare genetic, metabolic and autoimmune disorders at the Hospital within the recent years, also the expanding possibilities of international collaboration predispose further development of healthcare provision for patients with rare diseases and of the scientific research. We are open to any professional cooperation in this field of priority.

Center of Rare and Undiagnosed Diseases Kauno klinikos

Head of the coordinating center for rare and undiagnosed diseases
Prof. Milda Endzinienė
Phone: +37037326811
E-mail: milda.endziniene@kaunoklinikos.lt
 

Coordinator
Daiva Borkienė

E-mail: daiva.borkiene@kaunoklinikos.lt
Phone: +37067742046
E-mail: retos.ligos@kaunoklinikos.lt

  • Center of Rare Ophthalmological Diseases
  • Center for Rare Cardiovascular Diseases
  • Rare Endocrine Diseases Center
  • Rare Neurosurgical Diseases Center
  • Hemophilia and Coagulopathies Center
  • Rare Gastrointestinal and Liver Diseases Centre
  • Phakomatosis Centre
  • Primary Immunodeficiency Center
  • Center of Neuroendocrine Tumors
  • Pulmonary Hypertension Center
  • Adult Cystic Fibrosis Center
  • Sarcoma Center
  • Pediatric Oncology and Hematology Centre
  • Centre for Neuromuscular Disorders
  • Centre of Pediatric Chronic Respiratory Diseases
  • Children‘s Continence Center
  • Rare Skin Diseases Centre
  • Children‘s Chronic and Rare Kidney Diseases Center
  • Children‘s Cardiology Rheumatology Center for Rare Diseases
  • Rare Kidney Disease Center
  • Head and Neck Cancer Center
  • Asthma Center
  • Centre of Rare and Complex Connective Tissue Diseases
  • Rare Epilepsy Center
  • Rare Bone Diseases Center

Head Arvydas Gelžinis
Doctor ophthalmologist, PhD
Fields of interest: rare eye diseases in children and adults.
Tel. +37037326201, +37037326698
E-mail: arvydas.gelzinis@kaunoklinikos.lt
Expert Physicians (skilled in rare eye diseases)

The experts responsible for rare retinal diseases:

  • Stanislovaitienė Daiva, doctor ophthalmologist, PhD.
  • Miniauskienė Goda, doctor ophthalmologist, PhD.
  • Balčiūnienė Vilma Jūratė, doctor ophthalmologist, assoc. prof.
  • Buteikienė Dovilė, doctor ophthalmologist, PhD.
  • Špečkauskas Martynas, doctor ophthalmologist, PhD.

The experts responsible for rare anterior segment diseases:

  • Žemaitienė Reda, doctor ophthalmologist, assoc. prof. *
  • Jašinskas Vytautas, doctor ophthalmologist, prof. *
  • Trumpaitis Jurgis, doctor ophthalmologist, PhD *
  • Janulevičienė Ingrida, doctor ophthalmologist, prof.
  • Jankauskienė Jūratė, doctor ophthalmologist, prof.
  • Piškinienė Raimonda, doctor ophthalmologist, PhD.
  • Kuzmienė Loreta, doctor ophthalmologist, assoc. prof.
  • Puodžiuvienė Edita, doctor ophthalmologist, PhD.

The experts responsible for rare pediatric eye diseases:

  • Gelžinis Arvydas, doctor ophthalmologist, PhD. *
  • Jarušaitienė Dalia, doctor ophthalmologist, PhD.*

The expert responsible for rare neuro-ophthalmological diseases:

  • Glebauskienė Brigita, doctor ophthalmologist, PhD.*
  • Liutkevičienė Rasa, doctor ophthalmologist, assoc. prof.

The Area of Expertise

Invited to participate in four clinical groups of ERN - EYE Network (WG1: Rare Retinal Diseases, WG2: Rare Neuro ophthalmological Diseases, WG3: Rare Pediatric Ophthalmological Diseases, WG4: Rare Anterior segment Diseases).

Provided facilities

Rare Eye Disease Center consists of Lithuanian University of Health Sciences Kaunas Clinics Hospital Eye Clinic (further - Eye Clinic). Lithuanian University of Health Sciences Kaunas Clinics Hospital Eye Center for Rare Diseases (further - Rare Eye Disease Centre) was established in 2015-09- 25 by LUHS KC Director General Order No. V-988.
Health care facilities for rare diseases investigation and treatment are provided for more than 824 different rare eye diseases.
More than 1,000 patients (children and adults) with rare eye diseases are examined and treated in the LUHS KC Ophthalmology department per year. The Ophthalmology department can perform all specialized diagnostic investigation and visual function evaluation, such as visual function testing (Snellen and Log-MAR); ophthalmometry; biomicroscopy; confocal biomicroscopy; visual field investigation: computer projection, FDT, dark adaptation, colour perception tests (Munsell-Farnswoth 100 hue test, Maximum colour contrast sensitivity test), Functional acuity contrast sensitivity test by Ginsburg, optical coherence tomography (OCT), GD x VCC, HRT; eye fundus examination: direct and indirect ophthalmoscopy, eye fundus photography and follow-up; electrophysiological tests: ERG, EOG, vEPS (the Ophthalmology department being the only center in Lithuania where these tests are performed), binocular vision tests as well. 
Complex manipulations such as fluorescein angiography, photodynamic therapy, laser treatment, US α and β scanner examinations are performed. 
Complex ophthalmic surgery in both children and adults is also performed: cataract surgery, (for children the only center in Lithuania being the Eye Clinic), glaucoma surgery, malignant and non-malignant eyelid tumor surgery, brachytherapy, surgery after complex eye injuries, as well as vitrectomy/retinal surgery, strabismus, keratoplasty, keratoprosthesis surgery, eyelid surgery, Avastin/Lucentis/Eylea injection into the vitreous and enucleation.

Ongoing research projects or biomedical research in the field of RD

In collaboration with the Laboratory of Ophthalmology, LUHS NI carries out a research project: "Visual functions and new molecular prognostic markers search in patients with Pituitary adenoma”.

Publications on rare diseases

1.Imbrasienė D, Jankauskienė J, Stanislovaitienė D. Ultrasonic measurement of ocular rectus muscle thickness in patients with Graves’ ophthalmopathy. Medicina (Kaunas). 2010; 46(7):472-476. 
2.Jankauskienė J, Jarušaitienė D. Assessment of visual acuity, refraction changes, and proptosis in different ages of patients with thyroid diseases. Intern J of endocrinol. 2012; 1-4. 
3.Paunksnis A, Imbrasienė D, Liutkevičienė R, Rilienė K, Keleras E, Kėvalas R. Coats’ retinitis or retinoblastoma in a 3-year-old girl: a case report. Medicina (Kaunas). 2012; 48(4):224-227.
4.Liutkevičienė R, Lesauskaitė V, Ašmonienė V, Gelžinis A, Žaliūnienė D, Jašinskas V. Inherited macular dystrophies and differential diagnostics. Medicina (Kaunas). 2012; 48(9):485-495.
5.Krėpštė L, Žemaitienė R, Barzdžiukas V, Miliauskas A. Bilateral endogenous bacterial panophthalmitis. Medicina (Kaunas). 2013; 49(3), p. 143-147.
6.Kasputytė R, Slatkevičienė G, Liutkevičienė R, Glebauskienė B, Bernotas G, Tamašauskas A. Changes of visual functions in patients with pituitary adenoma. Medicina (Kaunas). 2013; 49(3):132-137.
7.Būdienė B, Liutkevičienė R, Žaliūnienė D. Best vitelliform macular dystrophy: literature review. Central European Journal of Medicine. 2014; 9(6):784-795.

Educational materials for patients

Patient education is carried out through LSMU KC website Patient e-portal. It contains 14 topics dedicated to eye diseases' descriptions
Lithuanian Society of Glaucoma

About Rare Diseases:

Axenfeld-Rieger Syndrome
Best disease
Cataract
Coats’ retinitis
Congenital glaucoma
Neuromyelitis optica
Retinoblastoma
Stargardt’s macular dystrophy
Aniridia
Endophthalmitis
X-linked juvenile retinoschisis
Keratoconus
Retinitis pigmentosa
Collaboration

Rare Eye Disease Centre cooperates with Centogene laboratory (Germany) with ongoing consultations under suspicion of novel mutations and other diseases.
Eye Clinic works closely with Laboratory of Ophthalmology at LUHS Neuroscience Institute (LUHS NI). Genetic markers in patients with acute optic neuritis and Devic's syndrome are analyzed under cooperation.

 

Head prof. Eglė Ereminienė
MD, PhD, cardiologist
Areas of interest: rare cardiovascular diseases, pulmonary hypertension, valvular heart disease, echocardiography, vascular ultrasound of the neck.
Phone: +37037326165
E-mail: egle.ereminiene@lsmuni.lt, eglerem@yahoo.com 

The Center for Rare Cardiovascular Diseases was established in 2016. The main clinical work, diagnostics and treatment, is conducted at the Department of Cardiology and covers over 42,000 outpatient appointments with more than 6,500 hospitalizations per year.

The Center closely collaborates with the Institute of Cardiology of the Lithuanian University of Health Sciences, the
Department of Cardiac, Thoracic and Vascular Surgery, the Department of Genetics and Molecular Medicine and many others. Since 2019, cardiogenetics program is available both at diagnostic and research level. The next-generation sequencing enables analysis of up to 238 genes associated with familial cardiopathies (channelopathies, rare arrhythmias, cardiomyopathies, aortic diseases and sudden cardiac death).

The experienced team of the Unit of Cardiac Arrhythmias operates within modern electrophysiology laboratories. The University hospital was the first institution in Lithuania where treatment of complex cardiac arrhythmias and implantation of pacemakers became available in 1963. Nowadays, the Center provides a comprehensive multifactorial evaluation and interventional treatment of rare and complex arrhythmic disorders for patients of all ages.

The Center provides clinical expertise in management of inherited heart muscle disorders, metabolic and neurological disorders with cardiovascular manifestations, complex and rare congenital heart disease, heart tumors, and end-stage heart failure. The multidisciplinary team of professionals provides access to specialized medical, surgical and electrophysiological assessment and treatment of these disorders. A wide spectrum of catheter interventions, such as valve replacements, vascular procedures, closure of septal defects and left atrial appendage are available.

The Center also provides a full range of open-heart cardiac surgery for congenital and acquired heart diseases including those with the most complex anatomy, surgery for hypertrophic obstructive cardiomyopathy, benign and malignant heart tumors. Experts in cardiology, pathology, oncology and radiology take part in the multidisciplinary team for management of patients with heart tumors. The implantation of ventricular assist devices, heart and heart-lung transplantations are performed for the end-stage heart failure patients.

The Center for Rare Cardiovascular Diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of rare cardiovascular diseases.

Since 2019, the Center is an Associated National Center in ERN GUARD-Heart – European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart.

Head prof. Birutė Žilaitienė
MD, PhD, professor
Phone: +37037326868, +37037326506
E-mail: birute.zilaitiene@kaunoklinikos.lt
Areas of interest: reproductive endocrinology, hypothalamus and pituary gland disorders, thyroid pathology.

The Rare Endocrine Diseases Center  has been endorsed by the Ministry of Health of the Republic of Lithuania as the national reference centre for the participation in the activities of the European Reference Networks in Endocrinology area.

Expert Physicians

Rasa Verkauskienė, MD, PhD, professor. Head of the Department of Endocrinology, pediatric endocrinologist. Area of interest: rare pediatric endocrine diseases.
Lina Barsienė, MD, PhD, endocrinologist. Head of Adult Endocrinology unit. Areas of interest: adrenal diseases, thyroid and parathyroid glands diseases.
Edita Jašinskienė, MD, PhD, Head of Pediatric Endocrinology unit, pediatric endocrinologist.
Aurelija Krasauskienė, MD, PhD, endocrinologist, associate  professor. Areas of interest: metabolic bone diseases, disorders of calcium and phosphate homeostasis.
Robertas Knispelis, MD, PhD, endocrinologist. Areas  of interest: hypothalamic dysfunction and pituitary gland disorders, rare adrenal and parathyroid gland diseases.
Romualdas Tomas Preikša, MD, PhD, pediatric endocrinologist. Areas of interest: disorders of sex development, hypogonadism.
Arimantas Tamašauskas, neurosurgeon, MD, PhD, professor, head of the Department of Neurosurgery. 
Milda Endzinienė, pediatric neurologist, MD, PhD, professor.
Gintaras Kuprionis, radiologist, MD, PhD.
Eglė Drejerienė, obstetrician-gynecologist, MD, PhD, associate professor
Astra Vitkauskienė, doctor of laboratory medicine, MD, PhD professor
Valdonė Misevičienė, pediatrician, MD, PhD, associate professor
Rasa Tamelienė, neonatologist, MD, PhD, associate professor
Dalius Malcius, pediatric surgeon, MD, PhD, associate professor

Special procedures and interventions, unique research and treatment methods

Specialised diagnostic procedures.
Clinical evaluation, laboratory hormone level evaluation and biochemical tests, diagnostic dinamic samples, ultrasound, aspirational punctures. Collaborating with the Department of Radiology complex radiological diagnostic tests are made – sinus petrosus and adrenal glands veins catheterisation samples. Also in the Department of Radiology all necessary descriptive tests are made – CT scan, magnetic resonance imaging (MRI), positron emission tomography (PET). In the Department of Genetics and Molecular Medicine genetic laboratoric tests are made to determine cause of rare endocrinological disease.
Treatment methods.
Depending on disease and its complications necessary treatment, including medicamental, surgical, radiological, chemotherapeutical or combined is provided. In majority of cases treatment strategy is defined by multidisciplinary consultations in which surgeons, pediatric surgeons, neurosurgeons, urologists, gynecologists, oncologists-radiotherapists and other specialists participate depending on the need.

Scientific research projects and clinical trials in the field of rare endocrine diseases ongoing in Rare Endocrinological diseases center. 
International scientific projects:

1. Lithuanian - Swiss program "Research and Development" project "Genetic diabetes Lithuania CH-3-MES-01/09.
2. International Alexander von Humboldt project "Gels mimicking antibody in Their selective recognition of different molecular forms of human growth hormone."
3. Projects with Max Bergman Biomaterials center of excellence, the Leibniz Institute of Polymer Research:
3.1. “Molecular Imprinting of Human Growth Hormone dimer" (2014)
3.2. “Molecular Imprinting of the Fragments of the Human Growth Hormone” (2015)
4. COST activity BM 1105th GnRH deficiency: Elucidation of the neuroendocrine control of Reproduction.
5. COST activity TD1103. European Network for Hyperpolarization Physics and Methodology in NMR and MRI.

Lithuanian science projects for rare endocrine diseases:
1.Research Council of Lithuania funded project “Cardiometabolic risk factors in Turner syndrome: prospective one population cohort study” MIP-15445. 
2. National Research Program Healthy Aging, funded by Research Council of Lithuania "Investigation of genetic and epigenetic prognostic markers for prediction of clinical course of papillary thyroid cancer in different age groups“ SEN-15050.

Publications on rare diseases

The most important international publications on rare endocrine diseases:

1. Juodelė L. Serapinas D., Sabaliauskas G., Krasauskiene A. Krasauskas V., Verkauskienė R., Barkauskienė D., Juozaityte E. Carcinoma of two parathyroid glands Caused by a novel MEN1 gene mutation - a rare feature of the MEN1 syndrome // Medicine. Kaunas. 2011 tons. 47, no. 11, p. 635-639.

2. Bacevičienė R., Valonytė L. Čeponis J. The effect of physiotherapy in addition to testosterone replacement therapy on the efficiency of the motor system in men with hypogonadism // Medicine. Kaunas. (Experimental investigations). 2013, vol. 49, no. 2, p. 71-77.

3. Verkauskienė R., Petraitienė I., K. Albertsson Wikland Puberty in children born small for gestational age // Hormone researchinpædiatrics. 2013, vol. 80, iss. 2, p. 69-77.

4. Kublickas R. H., Jarienė G. Polyacrylamide gels with ionized functional groups in their selective recognition of trimeric molecular for human growth hormone // Polymerbulletin. (Original Paper). 2013, vol. 70, no. 3, p. 985-992.

5. Lašaitė L. Čeponis J., Preikša R.T., Žilaitienė B. Impaired emotional state, quality of life and cognitive functions in young hypogonadal men // Andrology. (Original article). In 2014, vol. 46, no. 10, p. 1107-1112.

6. Navardauskaitė R., Dusatkova P., Obermannova B., Pfaeffle R. Blum W.F., Adukauskienė D., N. Smetanina, Cinek O., Verkauskienė R., Leb J. High prevalence of PROP1 defects in Lithuania: phenotypic findings in an ethnically homogenous cohort of patient with multiple pituitary hormone deficiency // The Journal of Clinical Endocrinology and Metabolism. In 2014, vol. 99, iss. 1, p. 299-306.

7. Petraitienė I., Barauskas G. Gulbinas A. Malcius D., Hussain K., Verkauskas G., Verkauskienė R. Congenital hyperinsulinism // Medicine. Amsterdam. (Casereport). In 2014, vol. 50, no. 3, p. 190-195.

8. Hernández-Ramírez LC Gabrovska P., Denes J., Table K. Trivellin G., Tilley D., Ferry F., Evans J., Ellard S., Grossman AB Roncaroli F., Gadelha MR Korbonits M., Knispelis R., Verkauskienė R. Landscape of familial isolated and young-Onset pituitary adenomas: prospective diagnosis in AIP mutation carriers // The Journal of Clinical Endocrinology and Metabolism. 2015 Vol. 100, iss. 9, p. E1242-E1254.

9. Krikščiūnienė R., Žilaitienė B., Verkauskienė R. The current management of  Turner syndrome. Minerva Endocrinologica. 2016, vol. 41, no. 1, p. 105-121.

10. Dusatkova P., Pfaffle R. Brown M.R., Akulevich N., Arnhold I.M.P., Kalina M.A., Kot K., Krzisnik C., Lemos M.C., Malikova J., Navardauskaitė R., Obermannova B., Pribilincova Z., Sallai A., Stipančić G., Verkauskienė R., Cinek O., Blum W.F., Parks J.S., Austerlitz F., Lebl J. Genesis of two most prevalent PROP1 causing gene variants combined pituitary hormone deficiency in 21 populations / European Journal of Human Genetics. 2016, vol. 24, no. 3, p. 415-420.

11. Lašaitė L, Čeponis J, Preikša RT, Žilaitienė B. Effects of two-year testosterone replacement therapy on cognition, emotions and quality of life in young and middle-aged hypogonadal men. Andrologia. 2016 Aug 22. [Epub ahead of print]

Rare endocrine diseases center cooperates with patient organizations:

Patients with pituitary disorders organization “AUŠVIS”: http://www.sveikaszmogus.lt/akromegalija

Association of patients with Turner syndrome: http://www.terneriosindromoasociacija.lt/

Society of patients with bone metabolic diseases "UOLA"

Lithuanian Diabetes Association: http://www.dia.lt/

Information in the media about rare endocrine diseases, events of rare endocrine diseases topics:

http://sveikata.lrytas.lt/ligos-ir-gydymas/kusingo-sindromas-jiezno-gyventojai-nuo-kosulio-luzo-sonkauliai.htm?p=1

http://www.moteris.lt/sveikata/reta-liga-sergantys-zmones-uzribyje.d?id=67247992

http://m.kauno.diena.lt/naujienos/sveikata/sveikata/retomis-ligomis-sergantys-zmones-nori-tinkamo-gydymo-677759

http://lsmuni.lt/media/dynamic/files/7167/2015_av22--10pslweb.pdf

Collaboration

Vilnius University
Kaunas University of Technology
Lithuanian Sports University
Vytautas Magnus University
University of Basel, University of Geneva, Switzerland
University of Tampere, University of Helsinki, Finland
University of Tartu, Molecular and Cell Biology Institute, Estonia
Dresden Technical University, Leibniz Polymer Research Institute, University of Hannover, Germany
Riga Stradins University, Latvia
Copenhagen University Hospital, Department of Growth and Reproduction, Denmark
Karolinska Institutet and Karolinska University Hospital, Sweden
Arimantas Tamašauskas, neurosurgeon, MD, PhD, professor, head of the Department of Neurosurgery.
Milda Endzinienė, pediatric neurologist, MD, PhD, professor.
Gintaras Kuprionis, radiologist, MD, PhD.
Eglė Drejerienė, obstetrician-gynecologist, MD, PhD, associate professor
Astra Vitkauskienė, doctor of laboratory medicine, MD, PhD professor
Valdonė Misevičienė, pediatrician, MD, PhD, associate professor
Rasa Tamelienė, neonatologist, MD, PhD, associate professor
Dalius Malcius, pediatric surgeon, MD, PhD, associate professor

LT04 12 euracan en

Head prof. Vytenis Pranas Deltuva
MD, PhD
Phone: +37037326549
E-mail: vytenis.deltuva@kaunoklinikos.lt
Expert Physicians (skilled in rare neurosurgical diseases)

Experts in the field of oncology:

Prof. Vytenis Pranas Deltuva, MD, PhD, Chief of Brain Surgery unit, neurosurgeon
Prof. Arimantas Tamašauskas, MD, PhD, Head of Neurosurgery Department of the Hospital of Lithuanian University of Health Sciences Kauno klinikos, neurosurgeon
Kęstutis Skauminas, MD, PhD, neurosurgeon
Kęstutis Šinkūnas, MD, PhD, neurosurgeon
Rita Pavalkytė, nurse

Experts in the field of vascular neurosurgery:

Prof. Arimantas Tamašauskas, MD, PhD, Chief of Neurosurgery Department, neurosurgeon
Prof. Vytenis Pranas Deltuva, MD, PhD, Chief of Brain Surgery unit, neurosurgeon
Egidijus Marcinkevičius, MD, PhD, neurosurgeon
Giedrimantas Bernotas, MD, PhD, neurosurgeon
Rita Kuzmienė, nurse

Experts in the field of pediatric neurosurgery:

Assoc. prof. Algimantas Matukevičius, MD, PhD, Chief of Pediatric Neurosurgery unit, neurosurgeon
Prof. Vytenis Pranas Deltuva, MD, PhD, Chief of Brain Surgery unit, neurosurgeon
Vytautas Ragaišis, MD, PhD, neurosurgeon
Mindaugas Urbonas, MD, neurosurgeon
Dainora Butkutė, nurse

Experts in the field of functional & stereotactic neurosurgery:

Prof. Vytenis Pranas Deltuva, MD, PhD, Chief of Brain Surgery unit, neurosurgeon
Andrius Radžiūnas, MD, neurosurgeon
Mindaugas Urbonas, MD, neurosurgeon
Rasa Kairienė, nurse

Experts in the field of pediatric neurosurgery:

Gintas Vaitkevičius, MD, PhD, neurosurgeon
Prof. Arimantas Tamašauskas, MD, PhD, Head of Neurosurgery Department, neurosurgeon
Kazys Vytautas Ambrozaitis, MD, PhD, neurosurgeon
Deividas Stukas, MD, neurosurgeon
Smaida Skupeikienė, nurse

Experts in the field of head & brain trauma:

Assoc. prof. Rimantas Vilcinis, MD, PhD, Chief of Head Injury unit, neurosurgeon
Prof. Vytenis Pranas Deltuva, MD, PhD, Chief of Brain Surgery unit, neurosurgeon
Laimutis Kalasauskas, MD, PhD, neurosurgeon
Algirdas Blazgys, MD, neurosurgeon
Nijolė Kamisaraitienė, nurse

Rare Neurosurgical Diseases Center provides comprehensive and multidisciplinary world-class care for patients suffering from neurosurgical disorders. Physicians from departments of Neurology, Oncology/Hematology, Radiology, Pathology, Pediatrics, Endocrinology, Psychiatry, ENT, Oral and Maxillofacial surgery, Neonatology, Plastic and Reconstructive surgery and Anesthesiology actively participate in patients management.

The Area of Expertise
Diseases and conditions treated at the Rare Neurosurgical Diseases Center:
1) Brain and spinal tumors;
2) Inherited nervous system disorders (encephalocele, congenital hydrocephalus, cysts, spina bifida, Arnold-Chiari malformations);
3) Inherited cranium development abnormalities (craniosynostosis);
4) Extrapiramidal and movement disorders (dystonia, Parkinson's disease, Huntington's disease, tremor);
5) Brain aneurysms and arteriovenous malformations;
6) Epilepsy;
7) Traumatic brain injury.

Provided services

Rare Neurosurgical Diseases Center is coordinated by the Department of Neurosurgery of the Hospital of Lithuanian University of Health Sciences Kauno klinikos, which provides world class care medical services for adults and children. At the Department of Neurosurgery neurosurgeons routinely use cutting-edge technological advances (intraoperative MRI, intraoperative CT, intraoperative ultrasound) to treat complex cerebrovascular diseases, brain and spinal tumors, skull base pathologies,and to perform functional and stereotactic surgeries. Patients from all regions of Lithuania are referred to our department to treat patients with arteriovenous malformations, cavernous angiomas, carotid-cavernous fistulas, ischemic and hemorrhagic strokes, complex brain aneurysms. Patients suffering from epilepsy, Parkinson's disease, tremor of various etiology, torsion dystonia, choreoathetosis, hemiballismus and other forms of extrapyramidal hyperkinesias are also evaluated and treated at our department. We also perform surgical operations for congenital and acquired cerebrospinal fluid circulation disorders (for example, hydrocephalus and cerebral cysts) and skull, spine, brain and spinal cord congenital deformations (for example, Chiari malformation and craniosynostosis).

Active research projects at the Rare Neurosurgical Diseases Center:
1. Etiopathogenesis, molecular mechanisms, diagnostics and treatment optimisation of rare central nervous system diseases.
2. Development of novel neuroendocrine and psychological prognostic factors in patients with central nervous system diseases.
3. Diagnostics and treatment of central nervous system tumors.
4. Diagnostics and treatment optimization of cerebral vascular disorders.
5. Surgical management optimization of functional neurological disorders and epilepsy.
6. Diagnostics and treatment optimization of severe traumatic brain injury.

Most important research publications in 2011–2016 about rare neurosurgical disorders (articles indexed in Thomson Reuters Web of Knowledge) (see below).

Patient education resources:

Patient education resources are published in the Hospital of Lithuanian University of Health Sciences Kauno klinikos web-page. Patient education material contains 30 topics about rare neurosurgical diseases.
Patient education resources about functional neurosurgical disorders (movements and pain disorders, epilepsy, etc.): http://funkcineneurochirurgija.lt/
Patient education resources about brain tumours (in English language): http://www.abta.org/
Scientific events organized by the Neurosurgery department during 2010–2015:
1. Conference Neuroscience for patients‘ welfare, May 23, 2014, Kaunas, Lithuania.
2. The 1st Baltic‐Nordic Summer School on Neuroinformatics (BNNI2013): Computations in the Brain and Translational Neuroscience, May 29-31,2013, Kaunas, Lithuania.
3. International Translational Neuroscience Conference, June 16-17,2011 Kaunas, Lithuania.

Lithuanian Brain Tumour Patients and their Caregivers Society
Chairwoman - Bronė Vengeliauskienė
Address: Brain Surgery Unit, Hospital of Lithuanian University of Health Sciences Kauno klinikos, Eiveniu str. 2, LT-50161, Kaunas, Lithuania
Correspondence address: Beržų g. 35-34, LT-36141, Panevėžys
Tel. (+370 37) 326549, Fax (+370 37) 331767 
E-mail.: bronyteiv@gmail.com, vytenis.deltuva@kaunoklinikos.lt

Publications on Rare Neurosurgical Diseases

Head assoc. prof. Rolandas Gerbutavičius
MD, PhD, hematologist
Phone: +37037326779
E-mail: rolandas.gerbutavicius@kaunoklinikos.lt
Areas of interest: congenital and acquired coagulopathies, hematopoietic stem cell transplantation.

Hemophilia and Coagulopathies Center was established in 2014. 

Patients with hemophilia and other coagulopathies are diagnosed and treated in the Unit of Hematology in the Department of Oncology and Hematology and in the Unit of Hematology in the Department of Pediatrics.

The Center closely collaborates with other departments of Kauno klinikos: Department of Laboratory Medicine, Orthopedic Surgery, Genetics and Molecular Medicine, Rehabilitation and many others. Center performs all screening laboratory tests for suspected inherited and acquired disorders related to hemostasis defects, coagulation factors antigen and activity levels with standard and chromogenic laboratory assays, measure natural anticoagulants antigen and activity levels, determine acquired anticoagulants against clotting factors titer, evaluate global coagulation activity with tromboelastography. Abnormalities of congenital and acquired primary hemostasis are investigated with platelet function analyzer PFA and platelet aggregometry test. Genetic counseling is provided for patients with congenital bleeding disorders and their family members.

The center ensures a comprehensive multifactor evaluation and treatment of rare and complex inherited and acquired bleeding or thrombotic disorders for patients of all ages.

The Center offers clinical expertise in the diagnosis and management of inherited and acquired Hemophilia A and B, Willebrand disease, factor VII deficiency, other rarer clotting factors deficiencies. The multidisciplinary team of professionals provides access to specialized diagnostic, medical, surgical and rehabilitation assessment and treatment of these disorders. There is a possibility for an individualized treatment with plasma clotting factors, recombinant standard half-life and extended half-life factor VIII or IX in the Center. These drugs are administered according to individualized pharmacokinetic parameters. Since 2020, a non-factor replacement therapy with monoclonal antibody for patients with severe form of hemophilia A became available. Immune tolerance regiments are used for inhibitory neutralization in patients with congenital hemophilia A with inhibitors. For patients with acquired hemophilia A, measurement of inhibitors titers with modified Bethesda assay is performed, and treatment with bypassing and immunosuppressive agents is administered. Consultations regarding problematic hemostatic management before surgery or other interventional procedures are provided by specialists of the Center in timely manner.

In cooperation with the Department of Orthopedic Surgery, complex hip or knee joint replacement procedures for patients with hemophilia A and B are performed followed by extended rehabilitation and physiotherapy. Home treatment plans are also prepared.

The Center for Hemophilia and Coagulopathies is also a teaching center that actively participates in national and international projects, registries and implements scientific and research programs in the field of rare bleeding diseases. Since 2016, the Center has been recognized as the European Hemophilia Treatment Center.

Head assoc. prof. Vitalija Petrenkienė
MD, PhD
Areas of interest: rare gastrointestinal and liver diseases, liver transplantology
Phone: +37037326188
E-mail: vitalijapetrenkiene@gmail.com

In 2019 Kauno klinikos has received the membership of European Reference Networks as an Affiliated Partner in the RARE-LIVER network https://rare-liver.eu/

The  Rare Gastrointestinal and Liver Diseases Center is a medical center, which is a functional unit at the  Gastoenterology Department of Hospital of Lithuanian University of Health Sciences Kauno klinikos. Center was established in 2012  and is the leading, highly specialised centre providing clinical care for multiple patients with a variety of rare gastrointestinal and liver pathologies.
Department of Gastroenterology is the largest digestive diseases clinic in Baltic States: 60 in-patient beds, an outpatient unit and Endoscopy unit with modern diagnostic equipe.

The team of the Center employs new clinical research and treatment techniques according to EU university clinics standards (interventional endoscopic and ultrasound procedures, contrast ultrasound procedures, transjugular intrahepatic portosystemic shunt formation (TIPS), transarterial chemoembolization (TACE), transjugular liver biopsy, manometry/pH-metry, capsular endoscopy, fecal microbiota transplantation, etc.) to improve the health and quality of life of people with rare gastrointestinal and liver diseases.

More than 2800 patients each year are treated on wards.  Furthermore, more then 14.000 endoscopy procedures: ERCP, EUS, enteroscopy, capsule endoscopy, and other endoscopic procedures are performed each year in Endoscopy unit.

In carrying out scientific activities, Center cooperates closely with Digestive System Research Institute. Collaboration takes place with specialists from various Hospital Clinics: pathologists, pediatric and adult surgeons, radiologists, genetics, immunologists, pediatric and adult anesthesiologists, intensive care specialists, obstetricians-gynecologists.

The Center work closely with patients organizations. Locally we work with the Crohn's and Colitis Association of Lithuania in the development of high quality service for patients with PSC/UC, AIH/UC, PSC/UC/CCC. We closely work with PSC Patients Europe (PSCPE) and together we have developed & published the PSC Brochure for GP. 

Taken into account our expertise in rare liver diseases, we believe that our Center will bring additional clinical, research and education value for rare liver diseases and serve as a valuable partner for all associated stakeholders across Lithuania and Europe.  The team based at the Hospital of LUHS works towards the development and application of new clinical approaches in order to improve the health outcomes of people living with rare liver diseases.

The Center for Rare Gastrointestinal and Liver Diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of rare gastrointestinal and liver diseases.

Center activities:

  1. ERN RARE-LIVER registry „ Recording patient data in the ERN Rare  liver diseases (R-LIVER)“.  The aim and task of the registry:: to record patient data in the European Reference Network on rare liver diseases (R-LIVER). Capturing data of patients with rare liver diseases (AIH, PBC, PSC) in order to collect and scientifically analyze such data with the aim of better understanding these diseases and improving the quality of treatment for the patients.
  2. The European Network for the Study of Cholangiocarcinoma (ENS-CCA). 
  3. The European Microscopic Colitis Group (EMCG)

The experts responsible for rare gastrointestinal and liver diseases:

  1. Limas Kupčinskas, gastroenterologist, MD, PhD, professor
  2. Juozas Kupčinskas, gastroenterologist, MD, PhD, professor
  3. Dainius Jančiauskas, pathologist, MD, PhD, associate professor 
  4. Tomas Vanagas, surgeon, MD, PhD
  5. Andrius Pranculis, radiologist, MD, PhD
  6. Brigita Šitkauskienė, imunologist/alergologist, MD, PhD, professor
  7. Vladas Gintautas, obstetrician-gynecologist, MD, PhD, associate professor
  8. Andrius Macas, anesthesiologist, MD, PhD, professor
  9. Vidas Pilvinis, intensive care,  MD, PhD, professor
  10. Kristina Žvinienė, radiologist, MD, PhD, associate professor
  11. Rūta Kučinskienė, pediatrition, MD, PhD, associate professor
  12. Vaidotas Gurskis, pediatrition MD, PhD, associate professor
  13. Rasa Ugenskienė, genetics, MD, PhD, professor
  14. Vidmantas Barauskas, pediatric surgeon, MD, PhD, professor

Areas of competence of the Center:

The center provided care for patients from all Lithuania  with Wilsons’s disease, Haemochromatosis, Primary sclerosing cholangitis, Primary biliary cholangitis, Budd-Chiari syndrome, Rare liver diseases of Pregnancy, Autoimmune hepatitis, Hepatocellular carcinoma, gastrointestinal stromal tumor (GIST), intrahepatic cholangiocarcinoma, eosinophilic colitis, eosinophilic esophagitis, etc.

Rare gastrointestinal and liver diseases.

Specialised interventions and treatment

  • The Department of Radiology provides specialised  interventional radiological procedures (TACE, TIPS, transjugular liver biopsy) for patiens with rare liver diseases.
  • Collaboration with experienced imunologists, pathologists facilitates the diagnosis of rare gastrointestinal and liver diseases
  • Collaboration with experienced surgeons, obstetritions, intensive care specialists facilitates the hight quolity treatmnet for patients with rare liver and gastrointestinal diseses.
  1. Transjugular intrahepatic portosystemic shunt formation (TIPS 
  2. Ttransarterial chemoembolization (TACE)
  3. Transjugular and percutaneous liver biopsy
  4. Manometry/pH-metrya
  5. Submucosal disecion of esophagial, gastric tumors 
  6. Intervencional endoscopic and ultrasound procedures
  7. Ultrasound with i/v contrast
  8. Capsular endoscopy
  9. Fecal microbiota transplantation
  10. Endosonographic procedures

Research projects  in the field of rare diseases:

  1. „Žarnyno–kraujo–kepenų ašis: cirkuliuojantis mikrobiomas kaip neinvazinis uždegiminių žarnyno ligų ir pirminio sklerozinio cholangito žymuo“.
  2. MicroRNA profiling and functional analysis in gastrointestinal stromal tumors" (Nr. MIP-006).

Biomedical research in the field of rare diseases

  1. Double-blind, randomized, placebo-controlled, phase II dose-finding study comparing different doses of norursodeoxycholic acid capsules with placebo in the treatment of primary sclerosing cholangitis, Protocol NUC-3/PSC
  2. Double-blind, randomized, placebocontrolled, phase III study comparing norursodeoxycholic acid capsules with placebo in the treatment of primary sclerosing cholangitis, Protocol  NUC-5/PSC
  3. A Phase 4, Double-Blind, Randomized, Placebo-Controlled, Multicenter Study Evaluating the Effect of Obeticholic Acid on Clinical Outcomes in Subjects with Primary Biliary Cholangitis,  Protocol 747-302
  4. A Phase 4, Double-Blind, Randomized, Placebo-Controlled Study Evaluating the Pharmacokinetics and Safety of Obeticholic Acid in Patients with Primary Biliary Cholangitis and Moderate to Severe Hepatic Impairment, Protocol 747-302.

Reseach publications on rare diseases

The researchers of the Center published a number of papers in high impact journals on rare disease topics.

Research publications on rare diseases

Clinical practice guidelines AIH
Clinical practice guidelines BCS

Educational materials for patient:

Information for patient who suffers from AIH
Information for patient who suffers from Budd-Chiari syndrome
Information for patient who suffers from PLL
Information about COVID-19

Websites:

https://gastroenterologija.lt/
https://www.draugija.info/lt/
www.lsgk.lt
https://www.psc-europe.eu/
http://www.transplantacija.lt
http://www.draugija.info/lt/

Online survey: https://ec.europa.eu/eusurvey/runner/rareliver

Head prof. Milda Endzinienė
MD, PhD, child neurologist
Phone: +37037326811
E-mail: milda.endziniene@kaunoklinikos.lt
Areas of interest: epilepsy, congenital disorders of the nervous system, rare diseases.

The Phakomatoses Center at the Hospital of Lithuanian University of Health Sciences Kauno klinikos has been established in 2012 and is under the rule of the Coordinating Center for Rare and Undiagnosed disorders at Kauno klinikos.  As most of the phakomatoses (neurocutaneous disorders) start in childhood and may progressively affect multiple organs, including nervous system, skin, heart, kidney, liver, etc., the patients need regular care and follow-up by competent specialists. The aim of the Phakomatoses Centre is to provide comprehensive multidisciplinary healthcare for patients of different ages with neurocutaneous disorders (tuberous sclerosis, neurofibromatosis type I-II, Sturge-Weber syndrome, Incontinentia pigmenti, etc.), also to ensure their smooth transition from childhood to adulthood healthcare.

Each patient with newly established diagnosis of a phakomatosis undergoes extensive investigations of all organs at risk, including radiology (CT, 1,5 and 3T MRI, SPECT, PET, with or without general anaesthesia), electrophysiology, laboratory, etc., with the plan for further treatment and multidisciplinary follow-up being developed and implemented by using the “green corridor” principle according to the recognised international guidelines. Tuberous sclerosis is managed according to the official hospital-based protocol. Modern surgery and medical treatments for phakomatoses-related epilepsy and tumours (optic glioma in neurofibromatosis type I, and subependymal giant cell brain astrocytoma/renal angiomyolipoma in tuberous sclerosis) with plasma level monitoring are available and provided by experienced paediatric and adult specialist team: neurologists, neurosurgeons, nephrologists, dermatologists, radiologists, gastroenterologists, cardiologists, oncologists, haematologists, developmental specialists. The Phakomatoses Centre closely collaborates with the Department of Genetics and Molecular Medicine in making the genetic diagnosis and councelling of most phakomatoses; the Department of Neurosurgery which is experienced in peripheral nerve/ brain tumour and epilepsy surgery (including gamma-knife, vagus nerve stimulation) and has wide international collaborations; the Institute of Neuroscience of the Lithuanian University of Health Sciences, and other relevant departments. Kauno klinikos holds full or affiliated membership of 13 different ERNs, so most of the Phakomatoses Centre medical team members are involved in the rare disease activities of at least some of them (EpiCare, ERN Skin, ERN GUARD-Heart, EURACAN, ERN Eye, ERN RARE-LIVER).

The Phakomatoses Centre has close collaboration with the Lithuanian University of Health Sciences and is involved in undergraduate and postgraduate education, also in research activities. The Centre maintains the databases of patients with phakomatoses attending Kauno klinikos and has been involved in the international TOSCA (TuberOus SClerosis registry to increase disease Awareness) registry. As a part  of the EU/Lithuania project “The Establishment of Rare Childhood Disease Competence Centre at the Hospital of the Lithuanian University of Health Sciences Kauno klinikos”, the Phakomatoses Centre developed guidelines “Childhood Tuberous Sclerosis: Diagnostics, Treatment and Long-term Follow-up” (see Publications at https://www.kaunoklinikos.lt/contacts/coordinating-center-for-rare-and-undiagnosed-diseases-/ (Phakomatoses Centre).

Publications.

Vaikų tuberozinė sklerozė: diagnostika, gydymas, ilgalaikė stebėsena. M. Endzinienė, L. Gumbelevičienė, J. Masalskienė. Kaunas, 2018.

Head dr. Edita Gasiūnienė
allergist and clinical immunologist
E-mail: edita.gasiuniene@kaunoklinikos.lt
Phone: +37037326063

Primary Immunodeficiency Center was established in 2012.

In Kauno klinikos, patients with primary immunodeficiency have been diagnosed and treated since 1999. The Center carries out testing and treatment of patients with Primary Immunodeficiency (PID) in accordance with current international standards. The Department of Immunology and Allergology carries out the activities of the Center and performs the functions assigned to it. The Department of Immunology and Allergology consists of the Outpatient clinic, Day care unit and the Laboratory of Immunology. Specialists consult patients of all age groups who are expected to have immune pathology related to allergy or other diseases. In Kauno klinikos, about 400 pediatric and adult patients are annually screened and treated for immunodeficiency conditions.

New diagnostic and treatment approaches of immune response in chronic or autoimmune diseases, transplantation, allergen challenge and immunotherapy are introduced every year.

The Center of Primary Immunodeficiency in Kauno klinikos has been a member of the Jeffrey Modell Foundation International Network since 2012 (www.info4pi.org/information-booth/find-an-expert). This facilitates the on-demand examination of patients and specialized treatment in primary immunodeficiency centers in other countries. The Center participates in J Project to increase the competence of medical professionals working in the field of PID and to improve patient examination and treatment. In 2015, the Center of Primary Immunodeficiency in Kauno klinikos was officially listed in Orphanet (www.orpha.net) as an expert center meeting the qualification requirements for such centers. Since 2019, the Center has been an associated national center in ERN RITA – European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases.

The Center closely collaborates with other departments of the Hospital in diagnosing and treating patients with immunodeficiency. Bone marrow transplantation is performed in the Department of Oncology and Hematology. Therefore, there isa possibility of bone marrow transplantation for patients with severe uncorrected primary immunodeficiency. Patients with end-stage organ damage may undergo transplantation other than bone marrow transplantation (including kidney, heart, lung, heart-lung complex, liver, etc.). In 2014, for the first time in Lithuania, a successful lung transplantation for a patient with primary immunodeficiency (common variable immunodeficiency) was performed. It was one of the 20 cases in the world at the time.

The Center of Primary Immunodeficiency is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of immunodeficiency disorders.

Head assoc. prof. Rasa Jančiauskienė
MD, PhD, medical oncologist, head of Oncology department in the Hospital of Lithuanian University of Health Sciences Kauno klinikos.
Phone: +37037326807
E-mail: rasa.janciauskiene@kaunoklinikos.lt
Areas of interest: diagnosis and management of gastrointestinal and neuroendocrine tumors.

Hospital of Lithuanian University of Health Sciences Kauno klinikos participates in the EU Joint Action on Rare Cancers: http://jointactionrarecancers.eu/​

Center of Neuroendocrine Tumors was established in 2013.

The main clinical work – diagnostics and treatment is conducted at the Department of Oncology and Haematology and covers over 20,000 outpatient appointments with more than 20,000 Chemotherapy Day Care Department visits and 6,500 hospitalizations per year.

Kauno klinikos has a full spectrum of specific diagnostic and treatment interventions for rare neuroendocrine cancer. Along with biochemical tests and all imaging possibilities (CT, MRI, PET-CT, SPECT-CT, tectrotide scintigraphy, J-123-MIBG scintigraphy), a full range of endoscopic diagnostic and treatment procedures are available (enteroscopy, capsule endoscopy, endoscopic ultrasound, endoscopic retrograde cholangiopancreatography, mucosectomy, etc.). NET patients are consulted by experienced clinical geneticists regarding hereditary syndromes, including multiple neuroendocrine neoplasia type 1 and 2 in the Department of Genetics and Molecular Medicine of Kauno klinikos. A full spectrum of laboratory genetic evaluation including all exome sequencing is available, too.

An entire range of diagnostic and treatment minimally invasive procedures are performed (biopsies from all visceral organs including pancreas, liver, lung, also bone, thyroid, lymphnodes, soft tissue) under CT, US control at the Department of Radiology in the Hospital. The Center also provides a full range of surgery (minimally invasive, wide open surgery, including liver and lung transplantation) for different types of gastrointestinal, pulmonary neuroendocrine benign tumors and cancers, including pancreatic, thymic, lung, small intestine, colorectal, etc.

A wide spectrum of modern radiotherapy is available in the Center: stereotactic radiotherapy, brachytherapy, IMRT, IGRT and image control for planning of dosage are used. Also the Gamma knife for many kinds of local and metastatic cancer is used in the Center. The modern radiopeptide therapy is used for the treatment of advanced somatostatin receptor expressing neuroendocrine tumors in the Department of Nuclear Medicine. All kinds of systemic cancer treatment are available in the Center (somatostatin analogs, targeted agents, immunotherapy and chemotherapy).

The Center provides clinical expertise in the management of gastroenteropancreatic neuroendocrine tumors, bronchial neuroendocrine tumors, thymic neuroendocrine tumors, adrenal and paraganglial tumors, medullary thyroid carcinoma, lung carcinoids and neuroendocrine carcinomas. In the Center, diagnosis of neuroendocrine cancer is confirmed histologically for around 150–170 new patients every year. Experts in pathology, medical oncology, radiation oncology, gastroenterology, endocrinology and radiology take part in the multidisciplinaryteam for management of patients with neuroendocrine tumors.

The Center for Rare Cancer of the Neuroendocrine System at the Hospital is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of rare neuroendocrine cancers.

Kauno klinikos holds a full European Reference Network for Rare Adult Cancers (ERN EURACAN) membership in the domain of Rare cancer of the brain and spinal cord since 2017.

The Ministry of Health confirmed that the Hospital of Lithuanian University of Health Sciences Kauno klinikos has been endorsed by the Ministry of Health of the Republic of Lithuania as an approved health care provider and an expert in the field of Rare cancer of the neuroendocrine system of the European Reference Network for Rare Adult Cancers (ERN EURACAN) in accordance with legal and regulatory requirements of the Republic of Lithuania on the 20th of March 2021. Kauno klinikos  is ready to expand its expertise in Rare cancer of the neuroendocrine system domain of the ERN EURACAN.

Head prof. Skaidrius Miliauskas
MD, PhD, pulmonologist
Phone: +37037326953
E-mail: skaidrius.miliauskas@kaunoklinikos.lt
Areas of interest: pulmonary diseases (pulmonary hypertension, pulmonary embolism), tuberculosis, and sleep apnea.

Pulmonary Hypertension Center was established in 2012.

The center takes care of various forms of pulmonary hypertension. The diagnosis and treatment of pulmonary hypertension are conducted at the Departments of Pulmonology or Cardiology. All the patients are constantly discussed by a multidisciplinary team composed of pulmonologists, cardiologists, radiologists, rheumatologists. There are also dedicatedcardiosurgeons, genetic specialists and gastroenterologists. The specialized nurse is the integral member of this health care team.

Currently, there are approximately 150 patients with pulmonary hypertension treated in the center. Most of the patients are from group one (idiopathic/hereditary, associated with connective tissue diseases) and four (chronic thromboembolic pulmonary hypertension), according to the World Health Organization (WHO). All routine investigations for this pathology, including right heart catheterization, heart magnetic resonance imaging, ventilation/perfusion scan, genetic counseling, are completely available at the site. Our center is one the two Lithuanian referral centers for this pathology.

Kauno klinikos is the only hospital in the Baltic States where the lung or heart/lung transplantation has been performed since 2007.

The modern medical treatment (endothelin receptor antagonists – bosentan, ambrisentan, macitentan), phosphodiesterase type 5 inhibitors – sildenafil, soluble guanylate cyclase stimulators – riociguat, prostacyclin receptor agonist-selexipag) including parenteral prostanoids (treprostinil) is available and fully reimbursed for patients. The Interventional Cardiology Unit is prepared for the baloon pulmonary angioplasty (BPA) program. Patients are sent for thrombintimendarterectomy to Amsterdam University Hospital, and all cases have been successful so far.

The Hospital of Lithuanian University of Health Sciences Kauno klinikos is the active associated member of ERN-LUNG in the area of pulmonary hypertension. The unclear or complicated cases are discussed in the Clinical Patent Management System (CPMS). There is an intense cooperation with Amsterdam University Hospital, Pulmonary Hypertension Centre of Hammersmith Hospital in London, Riga Stradins University Hospital, etc. There is also very good cooperation with patient organization (PHA Europe).

The Pulmonary hypertension center of Kauno klinikos participates in the international European COMPERA registry and clinical trials.

Head prof. Kęstutis Malakauskas
MD, PhD, pulmonologist
Phone: +37037326737
E-mail: kestutis.malakauskas@lsmuni.lt, cfcentras@kaunoklinikos.lt
Areas of interest: cystic fibrosis, asthma, chronic obstructive pulmonary disease, interstitial lung disease, pulmonary function tests, lung transplantation.

Adult Cystic Fibrosis Center was established in 2012 on the initiative of the Department of Pulmonology, taking into account the complexity of patients and the subtlety of diagnostic tests and treatment options.

The activities of the Center are carried out in one of the leading institutions in Lithuania, providing top-level (third-level) care of physicians of various specialties.

It is estimated that there are about 60 cystic fibrosis patients (including children and adults) in Lithuania. Two-thirds of them are supervised in Kauno klinikos; new ones are coming every year, and this number is growing.

The Center closely collaborates with the Department of Pediatrics. People with cystic fibrosis are usually cared for from childhood and referred to adult pulmonologists from the age of 18. Due to the peculiarities of the disease and possible damage to many organs, comprehensive care by professionals with experience in cystic fibrosis is required. Laboratory physicians, gastroenterologists, radiologists, dietitians, physical medicine doctors, and physiotherapists are actively involved in the activities of the Adult Cystic Fibrosis Center to achieve the best results.

The basic and innovative diagnostic tests are applied: a wide range of blood tests, lung function, radiological, sweat samples, genetic tests, including gene sequencing, are performed.The physicians adjust personalized treatment, which includes not only drugs that thin the bronchial secretions, antibiotics,digestive enzymes, but also an important part of the treatment is nutrition planning, specialized physiotherapy procedures. A cough assistant is used as needed to help remove the viscous secretion from the airways. The ports are implanted in all cases when long-term, frequent intravenous antibiotic treatment is required, or the patient has poor venous access.

The center operates in an organized manner and is patient centered. Contact visits take place according to the plan, but there is also an active telephone monitoring. In case of exacerbation with the need for hospital treatment, patients are usually hospitalized on the referral day. To optimize infection control, patients with cystic fibrosis are hospitalized in single wards. To facilitate the mobility of persons with cystic fibrosis, the physician caring for the patient contacts the cystic fibrosis specialist closest to the patient’s location abroad, provides medical information on the health condition and simplifies access to a specialist in case of deterioration if the trip is shortterm, or coordinates further monitoring and treatment in case of the long-term trip.

In 2013, the Adult Cystic Fibrosis Center was the first one from Lithuania involved in the activities of the European Cystic Fibrosis Society Patient Register. The generalized analysis of the data of the Register provides an opportunity for health care professionals and scientists to see and identify new trends in the development of the disease, identify the most effective treatments, create clinically-based new studies to introduce new, pathogenically active drugs into treatment practices. This would not be possible in separate specialized centers due to
the small number of patients with cystic fibrosis. The unifying activities of the registry expand the possibilities of cooperation with other cystic fibrosis centers in Europe. The Adult Cystic Fibrosis Center actively participates in reviewing and editing the annual reports published by the European Cystic Fibrosis Society Patient Registry. In 2019, the Department of Pulmonology of Kauno klinikos, where the Adult Cystic Fibrosis Center is located, has become an affiliated Center for Rare Diseases of European Reference Targets. This further facilitates collaboration with foreign professionals in improving diagnostic fields, treatment, and care for cystic fibrosis.

The Center also carries out scientific activities. In 2013, a textbook was published for medical students, internists, resident doctors, and patients with cystic fibrosis, their relatives and anyone interested in cystic fibrosis. Periodically, peer-reviewed articles summarizing the Centre’s performance are published. From 2020, Master’s thesis in physiotherapy is underway “Change in quality of life, physical capacity and respiratory parameters by applying a long-term physiotherapy program to patients with cystic fibrosis” (Lithuanian University of Health Sciences Bioethics Edition No. BEC-SR (M)-28, received on 16 November 2020).

Head Laimonas Jaruševičius
MD, PhD, radiooncologist
Head of the Radiotherapy Unit, Department of Oncology and Hematology. 
Phone: +37037326133
E-mail: laimonas.jarusevicius@kaunoklinikos.lt
Areas of interest: stereotactic radiotherapy, brachytherapy, high-precision radiotherapy.

Expert Physicians

Domas Vaitiekus, MD, PhD, medical oncologist, hematologist
E-mail: domasvait@gmail.com
Areas of interest: management of malignant connective tissue diseases (sarcomas); haematopoietic stem cell transplantation (bone marrow transplantation); management of melanoma, kidney cancer, lung cancer; germ cell tumors; high-dose chemotherapy; rare oncological diseases.

Laura Kairevičė, MD, PhD, medical oncologist
E-mail: laurakairev@yahoo.com
Areas of interest: colorectal cancer, sarcomas, germ cell tumors, urogenital cancer.

Skaistė Astašauskaitė, MD, medical oncologist
E-mail: skaiste.astasauskaite@kaunoklinikos.lt
Areas of interest: chemotherapy of malignant tumors, treatment of oncologic emergencies, and chemotherapy for gastrointestinal tract cancer, melanoma, sarcoma, head and neck tumors.

Mindaugas Stravinskas, MD, orthopedic traumatologist
Phone: +3703732 6212
Areas of interest: bone and soft tissue oncological diseases, systemic diseases; removal and reconstruction of limbs and pelvic, bone and soft tissue tumors; advanced oncological operations, bone transplantation; osteosynthesis in trauma patients; ultrasound guided minimally invasive interventions: tumor biopsy, puncture of cystic lesions.

Lina Poškienė, MD, PhD, pathologist
Phone: +37037327384
E-mail: lina_poskiene@yahoo.com
Prof. Eglė Monastyreckienė, MD, PhD, radiologist, head of the sector of Skeletal and soft tissue radiology
Phone: +37037327108
E-mail: egle.monastyreckiene@kaunoklinikos.lt
Eduardas Keleras, MD, radiologist
E-mail: eduardas.keleras@kaunoklinikos.lt

Hospital of Lithuanian University of Health Sciences Kauno klinikos participates in the EU Joint Action on Rare Cancers: http://jointactionrarecancers.eu/​

Head Giedrė Rutkauskienė
MD, PhD, pediatric oncologist
Phone: +37037703422
E-mail: giedre.rutkauskiene@kaunoklinikos.lt
Areas of interest: solid tumors in children, brain tumors in children, benign blood disorders.

Pediatric Oncology and Hematology Centre has been established in 2014.

The main clinical work of the Center conducted diagnostics and treatment of rare disease of blood and hemopoietic system and rare tumors in childhood at the Department of Pediatrics and covers over 3,000 outpatient appointments, with more than 500 hospitalizations per year and over 200 appointments at the Day hospital.

The Center closely collaborates with the Departments of Neurosurgery, Pediatric Surgery, Orthopedics, the Department of Pathology, Radiology, the Department of Genetics and Molecular Medicine and many others. The Center has been working on oncogenetic research program since 2019. The analysis of both somatic mutations from the tumor tissue and germ-line mutations is available and widely applied in our clinical work. The next-generation sequencing enables syndromes, coagulopathies, pathology of the platelets).

The specialists of the Center of Pediatric Oncology and Hematology have over 20 years of experience in diagnostics and treatment of pediatric tumors of the central nervous system. There are more than 30 new cases of brain tumors are diagnosedand treated every year in the Center. The Center provides complex diagnostic and treatment of pediatric solid tumors (tumors of the bone, soft tissues, kidney and others), lymphomas. Since 2018, the follow-up after the cancer treatment became available in the Outpatient Department, where the experienced specialists (pediatric neurologists, endocrinologists, orthopedics, nephrologists and others) provide the consultation according with international follow-up protocols.

The Center collaborates with international partners (NOPHO – Nordic Society of Pediatric Hematology and Oncology; SIOP – International Society of Pediatric Oncology), participates in Pediatric Solid tumors and Brain tumors working groups. Our specialists provide clinical expertise in the management of rare tumors, bleeding disorders, anemias of childhood and neonatal hematologic pathology. The multidisciplinary team of professionals provides access to specialized medical, surgical and radiologic assessment and treatment of these rare disorders.

There are wide spectrum of interventions, such as biopsy, removal of the tumor, modern radiotherapy, radionuclide imaging, the implantation of the central catheters and special reservoirs, making the treatment of aggressive tumors easier available in the Center.

The Center of Pediatric Oncology and Hematology at the Hospital of Kauno klinikos is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of rare tumors and disease of the blood in children.

Head Gineta Stankevičienė
MD, PhD, neurologist
Areas of interest: rare neurological disorders, epilepsy.
Phone: +37037326697
E-mail: gineta.stankeviciene@kaunoklinikos.lt

For many years specialists of the Hospital of Lithuanian University of Health Sciences Kauno klinikos have been involved in the diagnosis and management of patients with neuromuscular diseases (NMDs). The Centre for Pediatric Neuromuscular Diseases was established in 2012. In 2018, it was reorganized into the Centre of Neuromuscular Disorders, with the aim to provide and develop multidisciplinary care for both pediatric as well as adult patients with NMDs. Based on the already developed care model for pediatric patients, the newly established Centre consists of two dedicated teams of pediatric and adult specialists with expertise in NMD area. The teams were formed according to the international criteria and they work in close collaboration to ensure timely diagnosis and comprehensive care for NMD patients. The specialists of the Centre for Neuromuscular Diseases are involved in education of healthcare specialists and research activities as well. In 2019, Kauno klinikos has been endorsed by the Ministry of Health of the Republic of Lithuania as the national reference centre for the participation in the activities of the European Reference Networks on Rare Neuromuscular Diseases (ERN EURO-NMD).
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Daiva Borkienė
Coordinator, nurse
E-mail:daiva.borkiene@kaunoklinikos.lt
Phone: +37037326135

Pediatric specialists with expertise in NMD:

Milda Dambrauskienė, MD
pediatric neurologist
E-mail: milda.dambrauskiene@kaunoklinikos.lt
Phone:  +37037326697
Assoc. Prof. Audronė Prasauskienė, MD, PhD
pediatric neurologist
Indrė Bakanienė, MD
pediatric neurologist
Assoc. Prof. Valdonė Misevičienė, MD, PhD
pediatric pulmonologist
Prof. Laimutė Vaidelienė, MD, PhD
pediatric pulmonologist
Assoc. prof. Virginija Ašmonienė, MD, PhD
clinical geneticist
Rasa Traberg, MD
clinical geneticist
Migla Žėbienė, MD
pediatric cardiologist
Jolita Gintautienė, MD, PhD
orthopedic surgeon
Assoc. Prof. Rūta Kučinskienė, MD, PhD
pediatric gastroenterologist
Rūta Rokaitė, MD, PhD
pediatric gastroenterologist, dietician
Edita Jašinskienė, MD, PhD
pediatric endocrinologist
Romualdas Tomas Preikša, MD, PhD
pediatric endocrinologist
Assoc. Prof. Inesa Rimdeikienė, PhD
physiotherapist
Vaida Margevičiūtė
physiotherapist
Irina Banienė
psychologist

Adult specialists with expertise in NMD:

Gineta Stankevičienė, MD, PhD
neurologist
Miglė Ališauskienė, MD, PhD
neurologist
Daiva Garšvienė, MD, PhD
neurologist
Jovita Švilpauskė-Laurynienė, MD, PhD
neurologist
Gintautė Samušytė, MD
neurologist
Eglė Sukockienė, MD
neurologist
Prof. Kęstutis Petrikonis, MD, PhD
neurologist
Prof. Antanas Vaitkus, MD, PhD
neurologist
Guoda Vaitukaitienė, MD, PhD
pulmonologist
Prof. Skaidrius Miliauskas, MD, PhD
pulmonologist
Prof. Eglė Ereminienė, MD, PhD
cardiologist
Assoc. Prof. Aida Žvirblienė, MD, PhD
gastroenterologist, dietician
Dovilė Urbanavičiūtė, MD
dietician
Assoc. prof. Virginija Ašmonienė, MD, PhD
clinical geneticist
Rasa Traberg, MD
clinical geneticist
Toma Petkutė
physiotherapist

Specialised interventions
Diagnostic facilities include laboratory (biochemistry, immunology, etc.) tests, electroneuromyography, muscle biopsy, genetic testing and counselling. Clinical evaluation and assessment of functional status are performed by neurologists, physiotherapists, and other specialists, according to their area of expertise.
More than 1200 patients (1100 adults and 100 children) with suspected rare neuromuscular diseases are seen in an out-patient unit of the Department of Neurology each year. More than 330 adult patients and approximately 40 children with NMDs are admitted to the Department of Neurology for differential diagnosis or multidiciplinary evaluation annually.

Multidisciplinary approach
An individual multidisciplinary care plan is formed and implemented for each patient, according to their needs and condition. Many NMDs cause muscle weakness, leading to worsening of respiratory function, cardiac involvement, skeletal deformities, and impairment of gastrointestinal and endocrine systems. Health care providers of various specialties with expertise in NMDs perform tests, evaluate their result and provide recommendations for further care and management. A comprehensive follow-up plan is established and discussed with other specialists, the patient and their family, focusing on the most recent challenges. Patients are admitted to the Department of Neurology or Child Neurology for an annual comprehensive check-up on a regular basis. In some cases the patients are referred to the Children’s Rehabilitation Hospital “Lopšelis“ or Kulautuva Hospital of Rehabilitation for further evaluation and management.

Patients requiring surgery, are consulted by experienced anesthesiologists, who perform a comprehensive evaluation and select the safiest way to provide anesthesia. Pediatric Intensive Care Unit has the equipment to ensure non-invasive and invasive ventilation after surgery. Patients with NMD, who develop severe respiratory insufficiency, are followed by the specialists of PICU and the Centre for Pediatric Chronic Respiratory Diseases. Children with tracheostomy and/or gastrostomy receive regular care in the PICU or Pediatric Out-patient department. Adult patients are admitted to Day care unit. In case of severe acute conditions, when urgent treatment is necessary, patients are referred to Intensive care units.

The transition to adulthood
In order to ensure continuity of care for patients with NMDs, child neurologists start the process of transfer of teenage patients as they approach the age of 18 years. The most complicated cases are discussed at the multidisciplinary meetings of the NMD teams. Close collaboration with patient organization “Sraunija” ensures that expectations of patients and their families about improvement of care are met.

Management
Treatment and management is provided according to patients’ condition, stage of the disease, and complications. Since 2018, children with spinal muscular atrophy receive intrathecal nusinersen injections. Other treatment possibilities include steroids for Duchenne muscular dystrophy patients, medications and plasma exchange procedures in case of myasthenia, management of cardiomyopathy and respiratory complications, non-invasive and invasive ventilation, correction of low bone density and other endocrine issues, surgery for skeletal deformities, etc. In some cases collaboration with other specialists in Kauno klinikos or NMD centres abroad is required.
Patients are provided with information regarding their disease, treatment options, psychosocial issues, and patient organizations.

Materials for healthcare providers

  1. Guidelines “Long-term Multidisciplinary Care for Children with Progressive Muscular Dystrophies” (in Lithuanian, “Vaikų, sergančių progresuojančiomis raumenų distrofijomis, ilgalaikė daugiadalykė stebėsena”,  Kaunas 2018), prepared as a part of the EU/Lithuanian Ministry of Health Project “Establishment of Pediatric Rare Diseases Competence Centre at the Hospital of Lithuanian University of Health Sciences Kauno klinikos” (No. 08.1.3-CPVA-V-612-01-0008). Authors:  Milda Endzinienė, Neringa Valatkaitė, Audronė Prasauskienė, Milda Dambrauskienė). Approved by Lithuanian University of Health Sciences, Vilnius University, Lithuanian Child Neurology Association, and  Lithuanian Academy of Childhood Disability).
  2. Vaičienė-Magistris N. Nervų ir raumenų ligos (in Lithuanian, "Neuromuscular Diserases”). Textbook “Pediatrics” („Pediatrija“), ed. Kėvalas R., p.1020; Vitae Litera, 2018. 697-700.
  3. Vaičienė-Magistris N. “Neuroraumeninės ligos” (in Lithuanian, “Neuromuscular Diseases”). Textbook “Basics of Neurology” („Neurologijos pagrindai“), 2017: 213-29.
  4. Vaičienė-Magistris N., Parnarauskienė R., Rastenytė D., Jatužis D. Chapter “Neuroraumeninės ligos” (in Lithuanian, “Neuromuscular Diseases”, textbook “Clinical Neurology” („Klinikinė neurologija“), ed. Budrys V, 2009: 737-88.
  5. Dambrauskienė, Milda. Current Issues in Management of Spinal Muscular Atrophy (Spinalinės raumenų atrofijos gydymo naujienos) // Lietuvos gydytojo žurnalas. Kaunas : Medicinos spaudos namai. ISSN 1648-3154. 2018, Nr. 8(111), p. 39-41.
  6. Leaflets for general practitioners and pediatricians about the initial first signs and multidisciplinary care of spinal muscular atrophy, Duchenne muscular dystrophy, Charcot-Marie-Tooth patients.

Materials for patients
http://www.treat-nmd.eu/downloads/file/standardsofcare/dmd/lithuanian/DMD_FG2010_LTver2Print.pdf (DMD guide for patients and families, translated into Lithuanian, http://www.treat-nmd.eu/diagnosis-and-management-of-DMD)
http://www.treat-nmd.eu/downloads/file/standardsofcare/sma/lithuanian/SMA_FG_LTver2PrintVersion.pdf (SMA Standards of Care translated into Lithuanian, http://www.treat-nmd.eu/sma/care/care-standards/)

Updated standards of care:
http://www.treat-nmd.eu/care/sma/2017-standard-of-care-for-spinal-muscular-atrophy-sma/
http://www.treat-nmd.eu/care/dmd/diagnosis-management-DMD/

Useful links:
Lithuanian association of genetic neuromuscular disorders “Sraunija”: www.sraunija.lt
TREAT-NMD http://www.treat-nmd.eu/
EURO-NMD: https://ern-euro-nmd.eu/

Collaboration:
Children’s Rehabilitation Hospital “Lopšelis“
Kulautuva Hospital of Rehabilitation
Centre of Medical Genetics of Vilnius University Hospital Santaros klinikos

 

Head assoc. prof. Valdonė Misevičienė
MD, PhD, pediatric pulmonologist and allergist
Phone: +37037326119, +37037326789
E-mail: valdone.miseviciene@kaunoklinikos.lt

Centre of Pediatric Chronic Respiratory Diseases was established in 2012.

The Center provides outpatient and inpatient care including multidisciplinary care, modern diagnostic and treatment facilities, as well as the management of various chronic and rare respiratory disorders in childhood.

Our team of paediatric pulmonologists offers expertise in diagnosis and treatment of asthma, recurrent respiratory infections, chronic cough, wheezing and respiratory failure, as well as rare pulmonary conditions, such as cystic fibrosis, non-cystic fibrosis bronchiectasis, primary ciliary dyskinesia, sleep-disordered breathing, congenital abnormalities of airway and lung development, lung diseases of prematurity and others.

The Center offers a wide range of diagnostic services, including spirometry and whole body plethysmography, methacholine and exercise challenge, exhaled and nasal nitric oxide testing, diffusion capacity and respiratory muscle pressure measurements, multibreath washout tests, baby body plethysmography, polysomnography, bronchoscopy, bronchoalveolar lavage, lung biopsies, sweat tests, genetic testing, high-resolution and magnetic resonance chest imaging, allergy testing, etc.

Specialists of the Center adjust home oxygen therapy and ventilation (either invasive or non-invasive) as well as provide longitudinal care and home ventilation support for children with chronic respiratory failure due to various conditions and reasons. The Center closely cooperate with the Adult Cystic Fibrosis Center, Pediatric Surgery, Neurology, Endocrinology and other departments of Kauno klinikos.

All paediatric pulmonology patients have access to our full multidisciplinary team, including nurses, nutritionists, physiotherapists, social workers and psychologists enabling us to provide comprehensive, patient and family-centered care to each child we take care of.

The Center of Pediatric Chronic Respiratory Diseases of Kauno klinikos is also a teaching center that actively participates in various national and international projects, registries and implements scientific programs in the field of rare pulmonary diseases. The Center has referred data to European Cystic Fibrosis Society Patient’s Registry since 2018 and has been an associated national center in ERN LUNG – European Reference Network for Rare Respiratory Diseases since 2019.

Head assoc. prof. Šarūnas Rudaitis
MD, PhD, pediatric nephrologist
Phone: +37037326789
E-mail: sarunas.rudaitis@kaunoklinikos.lt

Children‘s Continence Center was established in 2014.

The main clinical work, diagnostics and treatment, is conducted at the Department of Pediatric and covers over 400 children with lower urinary tract dysfunction (100-150 new cases each year) and 70 children with rare voiding continence problems (over 5-10 new cases each year).

The aim of the Center is to initiate, form and implement high-quality and timely diagnostics and treatment and rehabilitation of children with lower urinary tract dysfunction by coordinating and integrating the activities of the units participating in the Center. The Center closely collaborates with the Pediatric Surgery Department, Department of Neurosurgery, Department of Neurology, Department of Nephrology, Department of Radiology, Rehabilitation Department, Psychiatric Department. The Centre also cooperates with one of the leading children continence centres in Utrecht, the Netherlands.

The Center provides clinical expertise in the management of congenital and acquired lower urinary tract dysfunction abnormalities. Invasive and non-invasive urodynamic studies are performed. Modern computer “Biofeedback” procedures are performed for patients with voiding dysfunction.

At the Center, a team of highly qualified specialists treats and monitors patients with lower urinary tract dysfunction; a special outpatient room for consultations and follow up of such patients is established.

The Children Continence Center at Kauno klinikos is also a teaching center that actively participates in teaching doctors and patients about children continence problems.


Head prof. Vesta Kučinskienė

Dermatovenereologist, MD, PhD, associate professor. Areas of interest: rare skin diseases, skin and sexually transmitted infections, psoriasis, atopic dermatitis.
Phone: +37037326266
E-mail: vesta.kucinskiene@kaunoklinikos.lt
On the 17th of May 2016, the Center of Rare Skin Diseases (CRSD)  has been endorsed by the Ministry of Health of the Republic of Lithuania as the national reference centre for the participation in the activities of the European Reference Networks in Dermatology area.

Since 15 December 2016, the Hospital of Lithuanian University of Health Sciences Kauno klinikos is approved member of the European Reference Network on Rare and Undiagnosed Skin Disorders (ERN-Skin).

Once a month, on penultimate Tuesdays, the CRSD organises interdisciplinary consultations of dermatovenereologists and other specialists for patients with severe rare skin diseases. The examination plan and necessary investigations are organised for each patient with a rare skin disease. Competent specialists of the CRSD evaluate tests results, summarise them, and present recommendations for further treatment and care.

Assoc. Prof. V. Kučinskienė consults patients with rare skin diseases every Monday from 14 to 16 p.m. in room No. 121 at the Department of Skin and Venereal Diseases of the Hospital of the Lithuanian University of Health Sciences Kauno klinikos. The registration is by phone: +370 37 326266 or +370 37 326784.

COVID-19 and rare skin diseases

Expert Physicians (skilled in rare skin diseases)

Skaidra Valiukevičienė, dermatovenereologist, professor, MD, PhD.
Head of the Department of Skin and Venereal Diseases.
Areas of interest: skin tumours, chronic inflammatory and rare skin diseases.
Phone: +370 37 326246; E-mail: Skaidra.Valiukevičienė@kaunoklinikos.lt

Jurgita Karčiauskienė, dermatovenereologist, MD, PhD.
Areas of interest: diseases of sebaceous glands of the skin, chronic inflammatory skin diseases, paediatric dermatology. 
Phone: +370 37 326246; E-mail: jurgita.karciauskiene@gmail.com
Jurgita Makštienė, pathologist, associate professor, MD, PhD.
Areas of interest: dermatopathology, histochemical, immunohistochemical, and molecular tests. 
Phone: +370 37 326879; E-mail: jurga.makstiene@gmail.com
Rytis Rimdeika, plastic surgeon, professor, MD, PhD.
Head of the Department of Plastic and Reconstructive Surgery.
Areas of interest: plastic surgery of chronic wounds, their complications and skin tumours. 
Phone: +370 37 326853; E-mail: Rytis.Rimdeika@kaunoklinikos.lt
Astra Vitkauskienė, doctor of laboratory medicine, professor, MD, PhD.
Head of the Department of Laboratory Medicine.
Areas of interest: skin infections and sexuality transmitted diseases.
Phone: +370 37 326775; E-mail: Astra.Vitkauskiene@kaunoklinikos.lt
Milda Endzinienė, neurologist, professor, MD, PhD. Areas of interest: phakomatoses (tuberous sclerosis, neurofibromatosis, hypomelanosis of Ito, Sturge-Weber syndrome etc.), congenital metabolic disorders with damage to the skin and the nervous systems.
Phone: +370 37 326811; E-mail: Milda.Endziniene@kaunoklinikos.lt
Brigita Šitkauskienė, allergist and clinical immunologist, professor, MD, PhD.
Areas of interest: peculiarities of the immune response in the presence of rare skin diseases.
Phone: +370 37 326551; E-mail: Brigita.Sitkauskiene@kaunoklinikos.lt
Asta Baranauskaitė, rheumatologist, professor, MD, PhD.
Head of the Department of Rheumatology
Areas of interest: systemic connective tissue dieases.
Phone: +370 37 326234; E-mail: Asta.Baranauskaite@kaunoklinikos.lt
Virginija Ašmonienė, geneticist, MD, PhD.
Head of the Department of Genetics and Molecular Medicine.
Areas of interest: prenatal diagnostics of rare diseases.
Phone: +370 37 326771; E-mail: Virginija.Asmoniene@kaunoklinikos.lt
Vidas Pilvinis, anaesthesiologist-resuscitation specialist, professor, MD, PhD.
Head of the Department of Intensive Care. 
Areas of interest: critical conditions of rare skin diseases.
Phone: +370 37 326217; E-mail: Vidas.Pilvinis@kaunoklinikos.lt
Jūratė Buinauskienė, neonatologist, professor, MD, PhD.
Areas of interest: congenital developmental, skin, and metabolic disorders.
Phone: +370 37 326797; E-mail: jbuinauskiene@yahoo.com
Jolanta Kudzytė, paediatrician, associate professor, MD, PhD.
Areas of interest: children’s skin diseases.
Phone: +370 37 327092; E-mail: Jolanta.Kudzyte@kaunoklinikos.lt

Birutė Žilaitienė, endocrinologist, MD, PhD, professor
Phone: +370 37 326868, +370 37 326506
E-mail: birute.zilaitiene@kaunoklinikos.lt
Areas of interest: reproductive endocrinology, hypothalamus and pituary gland disorders, thyroid pathology.

Coordinator

Rasa Laurinavičiūtė
Administrator, Department of Skin and Venereal Diseases
Phone: +370 37 326246
E-mail: odos.veneriniu.ligu.klinika@kaunoklinikos.lt, rasa.laurinaviciute@kaunoklinikos.lt
The Area of Expertise

The Centre of Rare Skin Diseases participates in the activities of ERN on Rare and Undiagnosed Skin Disorders (ERN-Skin) in five clinical groups of rare skin diseases:
Epidermolysis bullosa, 
Ichthyosis and palmoplantar keratoderma, 
Ectodermal dysplasia, 
Autoimmune bullous diseases and severe cutaneous drug reactions, 
Acquired immunological low prevalence and complex adult diseases of the skin.

The table of rare skin diseases, ICD-AM and ORPHA codes (see below).

Specialised Interventions

The Department of Skin and Venereal Diseases coordinates the activity of the Centre of Rare Skin Diseases (CRSD) and provides specialised outpatient and inpatient services (digital dermatoscopy and SIAscopy, high-frequency ultrasound, skin biopsy, skin contact allergy tests, microscopic and microbiological tests for skin infections, cryotherapy, outpatient dermatosurgery, narrowband ultraviolet B therapy, and bath PUVA therapy).

Collaboration with experienced dermatopathologists facilitates the diagnosis of rare skin diseases via immunohistochemistry (collagen type IV, identification of the inflammation phenotype), direct immunofluorescence of the skin (IGA, IGG, C3 complement, fibrinogen etc.)

The Department of Plastic and Reconstructive Surgery of the Hospital of the Lithuanian University of Health Sciences (LUHS) provides specialised surgical treatment for patients with complications of congenital bullous diseases and hidradenitis suppurativa.

Research Projects or Clinical Trials in the Area of Rare Skin Diseases

Clinical trial in the area of Dermatology, Children’s Ichthyosis, phase IV (2007-2008).

The Centre of Rare Skin Diseases participates in the activities of the project European Reference Network on Rare and Undiagnosed Skin Disorders-ERN-Skin (Nr. HP-ERN-2016, http://ec.europa.eu/chafea/health/hp-ern-2016_en.html ).

Patient education materials

Patient education materials on rare skin diseases are accessible on the links:

Genodermatoses and rare skin disorders: http://www.genodermatoses-network.orghttp://www.genodermatoses-network.org, https://ern-skin.eu/6344-2/
Epidermolysis bullosa: http://www.debra-international.org/patients.html
Ichthyosis: http://www.firstskinfoundation.org/content.cfm/Ichthyosis/What-is-Ichthyosis/page_id/952http://www.firstskinfoundation.org/content.cfm/Ichthyosis/What-is-Ichthyosis/page_id/952 
Autoimmune bullous diseases: http://rarediseases.org/rare-diseases/autoimmune-blistering-diseases/https://ern-skin.eu/6344-2/ 
Hidradenitis suppurativa: http://patient.info/health/hidradenitis-suppurativa-leaflethttps://ehsf.eu/patients/information-for-patients/https://www.hs-online.com.au/symptoms.html, https://ern-skin.eu/6344-2/

Websites Related to the Activities 

Experts of the EB Clinet (international network of epidermolysis bullosa): http://www.eb-clinet.org/partners/current-partners.html

The international network of genodermatoses and rare skin disorders: http://www.genodermatoses-network.org

European Hidradenitis Suppurativa Foundation http://www.ehsf.eu/

Collaboration

Lithuanian University of Health Sciences: www.lsmuni.lt

Kaunas Region Society of Dermatology and Venereology: www.kkdvd.lt

Lithuanian Society of Psoriatic Patients: www.zvyneline.info

National Alopecia Association: http://alopecia.lt

Conferences Organized

Annual meetings in February are dedicated to rare skin diseases. Web link: www.kkdvd.lt

Head prof. Jūratė Masalskienė
MD, PhD, pediatric nephrologist
Phone: +37037326286
E-mail: jurate.masalskiene@kaunoklinikos.lt

Children‘s Chronic and Rare Kidney Diseases Center was established in 2016. The main clinical work, diagnostics and treatment, is conducted at the Department of Pediatrics and covers over 260 children with rare and chronic kidney disease and over 50 new cases each year.

The aim of the Center is to initiate, form and implement high-quality and timely diagnostics and treatment and rehabilitation of children’s chronic and rare kidney diseases in Kaunas County and the country by coordinating and integrating the activities of the units participating in the Center. The Center closely collaborates with the Pediatric Surgery Department, Department of Neurosurgery, Department of Neurology, Department of Nephrology, Department of Neonatology, Department of Radiology, Department of Genetics and Molecular Medicine, Pediatric Rehabilitation Department, Psychiatric Department.

The Center provides clinical expertise in management of congenital abnormalities of kidney and urinary tract, tubular diseases, renal calculi and nephrocalcinosis, various forms of glomerular disease, renal cystic diseases and ciliopathies. Renal biopsies are performed for the differential diagnosis of diseases affecting the kidney tissue.

Here the team of highly qualified specialists treats and monitors patients with chronic and rare kidney diseases, prepares them for renal replacement therapy-peritoneal dialysis, hemodialysis and kidney transplantation, and monitors patients after kidney transplantation at the Center. In indications, patients are consulted by a multidisciplinary team meeting.

The Center provides emergency nephrology care in acute renal failure for 24 hours, allowing patients to undergo all renal replacement therapy procedures: hemodialysis, peritoneal dialysis, haemofiltration and hemodiafiltration at any age, including newborns.

The Center for Chronic and Rare Kidney Diseases in Children at Kauno klinikos is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of chronic and rare renal diseases. Methodological recommendations for the diagnosis and treatment of chronic and rare kidney diseases in children are prepared.

Head assoc. prof. Rima Šileikienė
MD, PhD, pediatric cardiologist
Phone: +37037326272
E-mail: rima.sileikiene@kaunoklinikos.lt
Areas of interest: rare cardiovascular diseases, echocardiography.

Children‘s Cardiology Rheumatology Center for Rare Diseases was established in 2016.

The Center for Rare Pediatric Cardiology Rheumatology Diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos was established in 2016. The Center was established to improve access to medical services for children with rare cardiovascular and connective tissue diseases. The main task of the Center is to provide qualified, timely, multidisciplinary medical assistance, using various specialists in pediatric diseases and other specialists of Kauno klinikos, diagnosing and selecting treatment tactics, and referring children with rare connective tissue and cardiovascular diseases to adult specialists.

The Center closely collaborates with the Department of Cardiology, especially with the Unit of Cardiac Arrhythmias. The first radiofrequency ablation procedure for the child with arrhythmia in Lithuania was performed in 1991 at Kauno klinikos. Nowadays, the Center provides comprehensive multifactor evaluation and interventional treatment of rare and complex arrhythmic disorders for children.

The Center actively collaborates with the Department of Genetics and Molecular Medicine. Since 2019, the cardiogenetics program is available both at the diagnostic and research levels. The next generation sequencing enables analysis of up to 238 genes associated with familial cardiopathies (channelopathies, arrhythmias, cardiomyopathies).

The Center provides assistance in rare autoimmune and autoinflammatory connective tissue diseases, such as juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis, chronic multifocal osteomyelitis, vasculitis, and others. Experts in pediatric and adult rheumatology, ophthalmology, immunology, pathology, oncology and radiology take part in the multidisciplinary team for management of children with connective tissue diseases.

Every year the Center specialists diagnose about thirty new cases of rare rheumatic diseases for children. Most of them are treated with the biological therapy.

The Center for Rare Pediatric Cardiology Rheumatology Diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos actively participates in national registries and implements scientific programs in the field of rare cardiovascular and rheumatic diseases.

The Center for Rare Pediatric Cardiology Rheumatology Diseases participates in the activities of the Adult Center for Rare and Complex Connective Tissue Diseases. Since 2020, the Centerfor Rare Pediatric Cardiology Rheumatology Diseases is a partof the National Center in ERN Re-CONNET – European Reference Network for Rare Connective Tissue Diseases.

Head prof. Inga Skarupskienė
MD, PhD, nephrologist
Phone: +37037326990
E-mail: inga.skarupskiene@kaunoklinikos.lt 
Areas of interest: resistant arterial hypertension, acute renal failure, glomerular disease, rare kidney diseases.

Rare Kidney Disease Center was established in 2017.

The main clinical work is organized and performed at the Department of Nephrology and comprises 15,000 – 16,000 outpatient appointments with more than 1,400 hospitalizations per year. The Department of Nephrology at Kauno klinikos is one of the largest nephrology centers in the Baltic States and provides specialized care for patients with kidney diseases, including clinical nephrology services, hemodialysis, peritoneal dialysis and kidney transplantation. The team of professionals working in the Center for Rare Adult Kidney diseases consists of five medical experts: three Professors and two Associate Professors. Units of Clinical Toxicology and Therapeutic Apheresis are included into the structure of the Department of Nephrology.

The Center closely collaborates with the Center of Rare Children’s Chronic and Rare Kidney Diseases as well as other Departments of Kauno klinikos like the Department of Urology, the Department of Radiology, the Department of Genetics and Molecular Medicine and the National Center of Pathology.

Modern laboratory (immunological and biochemical blood markers – anti-PLA2R, anti-THSD7A, ADAMTS13, anti-MPO, anti-PR3, etc.) and instrumental tests (renal ultrasound and dopplerography, intravenous urograms, dynamic renal scintigraphy, renal computed tomography and/or angiography, renal magnetic resonance imaging and/or renal angiography) are available for the diagnosis of renal diseases. Native kidney biopsies are also a part of the diagnostic algorithm that are performed when necessary. In case of a suspected inherited kidney disease, patients are referred to a genetic counseling and testing.

Here are patients with primary and secondary glomerulopathies (glomerulonephritis, vasculitis, amyloidosis), tubulointerstitial diseases (myeloma nephropathy, acute and chronic interstitial nephritis of various etiologies), thrombotic microangiopathies and inherited kidney diseases (tuberous sclerosis complex, tubulopathies, Alport syndrome, Fabry disease, polycystosis, etc.) examined and treated at the Department of Nephrology. The diagnostic and management strategy is discussed during the meetings of medical experts, highly skilled nephrologists and physicians of other specialties.

The Center for Rare Adult Kidney diseases is also a teaching center that organizes local and national educational and practical activities.

Head Viktoras Rudžianskas
MD, PhD, radio-oncologist
Phone: +37037326196
E-mail: viktoras.rudzianskas@kaunoklinikos.lt
Areas of interest: diagnosis and treatment of head and neck tumours, innovations in radiotherapy (intensity modulated radiotherapy, stereotactic radiotherapy, high-dose brachytherapy).

Head and Neck Cancer Center was established in November 2016.

Center activities are performed by the Department of Oncology and Hematology along with the Department of Otorhinolaryngology.

Several factors make this Center a unique one in Lithuania: its structure, coordination of multidisciplinary activities, specialist competence, as well as many years of experience in the field of rare head and neck cancer. Due to the mentioned qualities, the Center ensures the highest level of services for patients with rare head and neck tumors.

The Center is the only treatment center in Lithuania, which is qualified to perform sentinel lymph node biopsy, high dose brachytherapy and re-irradiation (using conformal radiotherapy, stereotactic body radiotherapy or brachytherapy) for head and neck cancer patients. Radiation therapy is planned by using new and advanced diagnostic methods, such as positron emission tomography/computed tomography (PET/CT). Merging of different radiological examinations ensures extra accuracy of the treatment. All patients are treated with intensity-modulated radiation therapy (IMRT) or volumetric modulated arc therapy (VMAT).

Additionally, the Gamma Knife unit in Kauno klinikos is currently used to treat tumors of the nasopharynx, paranasal sinuses and skull base.

Since June 2016, Department of Otorhinolaryngology has been equipped with Karl Storz OR1TM integrated operating theatre. It is the first operating theatre of this kind in the Baltic region, characterized by cutting-edge technological advances. It ensures high safety standards, hygiene, ergonomics and work efficiency. The operating room is equipped with the necessary endoscopic and navigational instruments. There is a possibility to store medical images in the hospital information system and broadcast the surgical procedures directly to the training rooms to ensure specialized education.

A mobile application “Voice Screen” has been used since 2017. The application performs an automatic analysis of the voice signal and, after evaluating six different parameters of the voice function, calculates an acoustic voice quality index. The index allows to measure possible voice changes objectively and makes appropriate recommendations. The app is used as a primary tool for laryngeal cancer screening and is easily accessible to patients. If the application indicates pathological voice changes, the patient is referred for further examinations to otorhinolaryngology specialist. The gadget is currently available in seven different languages.

The range of laboratory and genetic testing is constantly expanding: new effective immunogenic marker tests were implemented for use in cases of squamous cell carcinoma of the larynx and mouth floor. Scientific research project of correlations between telomere length and the phenotype of laryngeal squamous cell carcinoma is being performed. Furthermore, a number of single nucleotide polymorphism and miRNA studies in the field of head and neck cancer are currently ongoing.

Since 2020, the Center for Rare Head and Neck Cancer has been participating in a project organized by the European Cooperation in Science and Technology (e-COST) on the topic “Interception of Oral Cancer Development (INTERCEPT)”. The Center cooperates in fields of Biobank and Biomarkers, as well as Health Economics and Ethics.

In 2017, the Baltic States Head and Neck Oncology Association was established. The aim of the Association is to promote the development of head and neck oncology in the Baltic States through medical science and practice, to coordinate the activities of the Association members, to represent the interests of Association members and meet other public interests. In April 2018, during the European Congress of Head and Neck Oncology (ECHNO) in Rome, the Baltic Head and Neck Association became a member of the European Head and Neck Society (EHNS).

Head assoc. prof. Kristina Biekšienė
MD, PhD, pulmonologist
Phone: +37037326544
E-mail: kristina.bieksiene@kaunoklinikos.lt
Areas of interest: asthma, chronic cough, chronic obstructive pulmonary disease, interstitial lung disease, lung cancer.

Severe Asthma Center was established in 2017.

The work of the center is coordinated by the Department of Pulmonology – the most advanced Department in this field in Lithuania.

The aim of the Center is to initiate, form and implement high-quality and timely diagnosis and treatment of severe asthma by coordinating and integrating the activities of the units participating in the Center. The activities of the Severe Asthma Center take place in three directions: clinical practice, research and teaching.

The Department of Allergology and Clinical Immunology, the Department of Pediatrics, the Department of Ear, Nose and Throat diseases, the Department of Gastroenterology, the Department of Rehabilitation participate in the work of the Severe Asthma Center, performing the functions assigned to it. The Center also closely collaborates with the Department of Radiology, the Department of Cardiology and many others.

The Department of Pulmonology has Pulmonary Function Testing Unit, Interventional Pulmonology Unit, Sleep Laboratory. With the latest modern equipment, a wide range of lung functional tests (spirogram, bronchial inhalation provocation test with methacholine, allergen, exercise challenge test, gas diffusion test, plethysmography, respiratory muscle force measurement, exercise load tolerance test, sputum induction, etc.) are performed. The Bronchology Unit performs complex, wide-profile interventional procedures that, in some cases, delay or even replace the need for surgical procedures.

Severe asthma research projects are carried out in the Pulmonary Laboratory of the Department of Pulmonology. One of the main research areas of the laboratory – issues of etiology, pathogenesis, pathophysiology, diagnosis, treatment of chronic obstructive pulmonary diseases. Updating Lab equipment system for the growth of structural lung cells and the formation of combined cell cultures has been introduced.

The Severe asthma Center doctors have multidisciplinary teams meetings once a week were the cases of severe asthma are discussed. Severe asthma treatment with biologics has started since 2018. More than 100 asthma patients on biologics are followed up in the Severe Asthma Center. A “green corridor” has been created to improve the health care for patients with severe asthma. The Green Corridor helps patients reach a severe asthma specialist as quickly as possible.

The Severe Asthma Center at the Hospital of Lithuanian University of Health Sciences Kauno klinikos has joined the European Respiratory Society project SHARP CRC (Severe Heterogeneous Asthma Research collaboration, Patient-centered Clinical Research Collaboration). The head of the Severe Asthma Center is the national lead for this project. Participating in this project the Department of Pulmonology has joined European Severe Asthma register SHARP Central and carries out several research projects together with other European countries.

Head Giedrė Gelžinienė, MD, PhD
El. p. giedre.gelziniene@kaunoklinikos.lt
Tel. +37037326634

Team members:

Neurologists: 
Giedrė Jurkevičienė, MD, PhD 
Adult neurologist, EEG evaluation (giedre.jurkeviciene@kaunoklinikos.lt)

Giedrė Gelžinienė, MD, PhD
 Adult neurologist, EEG evaluation (giedre.gelziniene@kaunoklinikos.lt)

Gineta Stankevičienė MD, PhD 
Adult neurologist, EEG evaluation (gineta.stankeviciene@kaunoklinikos.lt)

Vanda Jaškevičienė, MD
Adult neurologist (vanda.jaskeviciene@kaunoklinikos.lt)

Milda Endzinienė, MD, PhD
Pediatric neurologist (milda.endziniene@kaunoklinikos.lt)

Jūratė Laurynaitienė, MD, PhD 
Pediatric neurologist (jurate.laurynaitiene@kaunoklinikos.lt)

Kristina Zaveckienė, MD 
Pediatric neurologist, EEG evaluation (kristina.zaveckiene@kaunoklinikos.lt)

Lingvita Gumbelevičienė, MD 
Pediatric neurologist, EEG evaluation (lingvita.gumbeleviciene@kaunoklinikos.lt)

Jurgita Karandienė, MD 
Pediatric neurologist, EEG evaluation (j.karandiene@gmail.com)

Neonatologists: 
Dalia Stonienė, MD, PhD (dalia.stoniene@kaunoklinikos.lt)

Aušrelė Kudrevičienė, MD, PhD (ausrele.kudreviciene@kaunoklinikos.lt)

Reanimatologists:
Tomas Tamošuitis, MD, PhD (adults) (tomas.tamosuitis@kaunoklinikos.lt)
Vaidotas Gurskis, MD, PhD (children) (vaidotas.gurskis@kaunoklinikos.lt)

Neurosurgeons: 
Vytenis Pranas Deltuva, MD, PhD (vytenis.deltuva@kaunoklinikos.lt)
Andrius Radžiūnas, MD, PhD (andrius.radziunas@kaunoklinikos.lt)
Algimantas Matukevičius, MD, PhD (algimantas.matukevicius@kaunoklinikos.lt)
Mindaugas Urbonas, MD (mindaugas.urbonas@kaunoklinikos.lt)

Neuropsychologists: 

Aistė Pranckevičienė, MS, PhD (aiste.pranckeviciene@lsmuni.lt)
Vitalija Marmienė, MS (vitalija.marmiene@kaunoklinikos.lt)

Clinical nurse: 
Daiva Borkienė, MS (daiva.borkiene@kaunoklinikos.lt)

Clinical geneticists: 
Virginija Ašmonienė, MD, PhD (virginija.asmoniene@kaunoklinikos.lt)
Rasa Traberg (rasa.traberg@kaunoklinikos.lt)
Lina Basel-Salmon, MD, PhD (Israel, Consultant)

Epilepsy center (EC) manages the healthcare of adult and pediatric patients with rare, complex epilepsies. It is a functional centre which coordinates the activities of all the relevant hospital units involved in the care of epilepsy cases. 
EC provides evaluation and treatment of patients with epilepsy according to high quality international standards. Patients with rare, complex disorders that require multidiscipline and personalized attitude are treated in the EC. 
The main functions of the EC are fulfilled by Neurology department in close cooperation with departments of Neurosurgery, Radiology, Pediatric diseases, Genetics and Molecular Medicine, Laboratory Medicine, Psychiatry, Rehabilitation, Pathological Anatomy, Anaesthesiology (Picture 1). Other departments take part in the multidisciplinary approach of epilepsy patients if needed. 
Picture 1. Organisation and intergration of multidisciplinar HLUHS KK Epilepsy Center 
 

The structure and coordination of the Centre's multidisciplinary, professional competence and long experience in the field of epilepsy ensure the highest level of service with a complex, rare, or combined treatment resistant epilepsy. 
Multidisciplinary meetings are organzed for all complicated and drug-resistant epilepsy cases, in particular: whenever surgery, vagus nerve stimulation or ketogenic diet is considered, also before transferring a child with complex epilepsy to adult care, or when an application for the reimbursement for an orphan treatment is considered. Besides, multidisciplinary epilepsy team members take part in the diagnostic process and follow-up of epilepsy patients after surgery, VNS and those on ketogenic diet according to the approved schedule, and have common discussions on the cases in the course of epilepsy whenever need.
The core unit of EC is Neurology department which provides secondary and tertiary level health service for neurological and pediatric neurological patients from Lithuania and abroad. Neurology Department consists of Adult and Pediatric Neurology units with out-patient and in-patient departments. Subunits for adult and pediatric patients with Epilepsy and other paroxysmal disorders are present. 
In the EEG laboratory all the type of EEG recordings are available including long-term video – EEG monitoring and invasive/intraoperative EEG recordings. There are 5 stationary EEG machines and one portable EEG device for EEG recordings in the adult, pediatric and newborn intensive care units, other departments or operation theatre. EEG during PET evaluation is also recorded.  

Scientific publications in the field of epilepsy: 

  1. Budrys, Tomas; Basevičius, Algidas; Gleiznienė, Rymantė; Jurkevičienė, Giedrė et al. Comparative analysis of epileptogenic changes detected on the PET/CT, EEG and MRI scans and their correlation with post-surgery outcomes // Informatica. Vilnius : Institute of Mathematics and Informatics. ISSN 0868-4952. 2018, vol. 29, no. 3, p. 421-38. 
  2. Jesmanas, Simonas; Norvainytė, Kristina; Gleiznienė, Rymantė; Šimoliūnienė, Renata; Endzinienė, Milda. Different MRI-defined tuber types in tuberous sclerosis complex: Quantitative evaluation and association with disease manifestations // Brain & Development. Amsterdam : Elsevier. ISSN 0387-7604. 2018, vol. 40, no. 3, p. 196-204. 
  3. Kučinskas L, Jurkevičiūtė G, Gleiznienė R. KT ir MRT epilepsijos diagnostikoje: metodai, radiniai, galimybės. ISSN: 1392-3064 ; DOI: 10.29014/ns.2018.11. UDK: 616.853. Neurologijos seminarai = Seminars in Neurology. Vilnius : Rotas 2018, t. 22, Nr. 2(76). p. 89-98.
  4. Knaus, Alexej; Pantel, Jean Tori; Pendziwiat, Manuela; Hajjir, Nurulhuda; Zhao, Max; Hsieh, Tzung-Chien; Schubach, Max; Gurovich, Yaron; Fleischer, Nicole; Jäger, Marten; Köhler, Sebastian; Muhle, Hiltrud; Korff, Christian; Møller, Rikke S; Bayat, Allan; Calvas, Patrick; Chassaing, Nicolas; Warren, Hannah; Skinner, Steven; Louie, Raymond; Evers, Christina; Bohn, Marc; Christen, Hans-Jürgen; van den Born, Myrthe; Obersztyn, Ewa; Charzewska, Agnieszka; Endzinienė, Milda; Kortüm, Fanny; Brown, Natasha; Robinson, Peter N; Schelhaas, Helenius J; Weber, Yvonne; Helbig, Ingo; Mundlos, Stefan; Horn, Denise; Krawitz, Peter M. Characterization of glycosylphosphatidylinositol biosynthesis defects by clinical features, flow cytometry, and automated image analysis // Genome Medicine. London : BioMed Central. ISSN 1756-994X. 2018, vol. 10, no. 1, p. 1-13. 
  5. Budrys, Tomas; Jurkevičiūtė, Greta; Kučinskas, Laurynas; Gleiznienė, Rymantė; Jurkevičienė, Giedrė; Basevičius, Algidas. Advanced imaging in epilepsy: literature review and our experience // Radiology update. Kaunas : Lithuanian Society of Radiology. eISSN 2424-5755. 2018, vol. 2(3), p. 60-. [IndexCopernicus] 
  6. Kučinskas, Laurynas; Jurkevičiūtė, Greta; Gleiznienė, Rymantė; Jurkevičienė, Giedrė. Epilepsijos diagnozavimas: vaizdinių galvos smegenų ir elektroencefalografijos tyrimų svarba bei sąsajos = Diagnosing epilepsy: The associations between EEG and neuroimaging // Lietuvos bendrosios praktikos gydytojas. Kaunas : Vitae Litera. ISSN 1392-3218. 2018, t. 22, Nr. 4, p. 216-22. 
  7. Šmigelskytė, Agnė; Remenčiūtė, Monika; Gelžinienė, Giedrė; Jurkevičienė, Giedrė. Potrauminės epilepsijos ypatumai // Neurologijos seminarai = Seminars in Neurology. Vilnius : Rotas. ISSN 1392-3064. eISSN 2424-5917. 2018, t. 22, Nr. 3(77), p. 188-93. 
  8. Gelžinienė, Giedrė; Endzinienė, Milda; Jurkevičienė, Giedrė. EEG activation by neuropsychological tasks in idiopathic generalized epilepsy of adolescence // Brain & Development. Amsterdam : Elsevier. ISSN 0387-7604. 2015, vol. 37, no. 4, p. 409-17.
  9. Jurkevičienė, Giedrė; Endzinienė, Milda; Laukienė, Ilona; Šaferis, Viktoras; Rastenytė, Daiva; Plioplys, Sigita; Vaičienė-Magistris, Nerija. Association of language dysfunction and age of onset of benign epilepsy with centrotemporal spikes in children // European Journal of Paediatric Neurology. London ; Philadelphia : Saunders. ISSN 1090-3798. 2012, vol. 16, no. 6, p. 653-61. 
  10. Krauss, Gregory Lewis; Bar, Michal; Biton, Victor; Klapper, JA; Rektor, Ivan; Vaičienė-Magistris, Nerija; Squillacote, Christopher David; Kumar, D. Tolerability and safety of perampanel: two randomized dose-escalation studies // Acta Neurologica Scandinavica. Hoboken : Wiley-Blackwell. 2012, vol. 125, no. 1, p. 8-15. 
  11. Krauss, Gregory Lewis; Serratosa, J M; Villanueva, V; Endzinienė, Milda; Hong, Z; French, J; Yang, H; Squillacote, D; Edwards, H B; Zhu, J; Laurenza, A. Randomized phase III study 306: Adjunctive perampanel for refractory partial-onset seizures // Neurology. Hagerstown : Lippincott Williams & Wilkins. ISSN 0028-3878. 2012, vol. 78, iss. 18, p. 1408-15. 
  12. Rektor, Ivan; Krauss, Gregory Lewis; Bar, M; Biton, Victor; Klapper, Jack A; Vaičienė-Magistris, Nerija; Kuba, R; Squillacote, D; Gee, M; Kumar, D. Perampanel Study 207 : long-term open label evaluation in patients with epilepsy // Acta neurologica Scandinavica. Hoboken, NJ : Wiley-Blackwell. ISSN 0001-6314. 2012, vol. 126, no. 4, p. 263-269. 
  13. Samaitienė, Rūta; Norkūnienė, Jolita; Jurkevičienė, Giedrė; Grikinienė, Jurgita. Behavioral problems in children with benign childhood epilepsy with centrotemporal spikes treated and untreated with antiepileptic drugs // Medicina. Kaunas : Lietuvos sveikatos mokslų universitetas. ISSN 1010-660X. 2012, t. 48, Nr. 7, p. 338-44. 
  14. Gelžinienė, Giedrė; Jurkevičienė, Giedrė; Marmienė, Vitalija; Adomaitienė, Virginija; Endzinienė, Milda. Executive functions in adolescents with idiopathic generalized epilepsy // Medicina. Kaunas : Lietuvos sveikatos mokslų universitetas. ISSN 1010-660X. 2011, t. 47, Nr. 6, p. 313-319.
  15. Endzinienė, Milda; Stonkutė, Rasa. Epilepsinė būklė // Neurologijos seminarai = Seminars in Neurology. Vilnius : Rotas. ISSN 1392-3064. 2015, t. 19, Nr. 1(63), p. 5-12. [IndexCopernicus] 
  16. Gelžinienė, Giedrė; Endzinienė, Milda. Klinikiniai ir elektroencefalografiniai jaunuolių idiopatinės generalizuotos epilepsijos požymiai // Neurologijos seminarai = Seminars in Neurology. ISSN 1392-3064. 2011, T. 15, Nr. 2(48), p. 119-27. 
  17. Gelžinienė, Giedrė; Šimaitytė, Inga; Endzinienė, Milda. Paauglių, sergančių idiopatine generalizuota epilepsija, nerimo ir depresijos simptomai // Neurologijos seminarai = Seminars in Neurology. ISSN 1392-3064. 2011, T. 15, Nr. 1(47), p. 44-51. 
  18. Butvilas D, Kriščiūnas A, Endzinienė M, Jurkevičienė G, Švedaitė-Sakalauskė B.Jaunų žmonių, sergančių epilepsija, gyvenimo pilnatvė. Neurologijos seminarai 2010; 14(44): 86-92.20. 
  19. Butvilas D, Kriščiūnas A, Endzinienė M, Jurkevičienė G, Švedaitė-Sakalauskė B. Jaunų žmonių, sergančių epilepsija, reabilitacijos efektyvumas. Neurologijos seminarai 2010; 14(44): 93-99. 
  20. Endzinienė M. Sunki kūdikių miokloninė epilepsija (Dravet sindromas). Neurologijos seminarai 2010; 14(43): 5-15.
  21. Gelžinienė G, Endzinienė M, Vaičienė N, Magistris MR, Seeck M. Presurgical evaluation of epilepsy patients. Medicina (Kaunas). 2008;44(8):585-92.


Abstracts of presentations at international congresses (2016-2018)

  1. Budrys T, Basevicius A, Gleizniene R,  Jurkeviciene G, Kulakiene I, Jurevicius T, Correlation of epileptogenic changes detected on PET/CT, MRI and electrophysiological studies // 7th Baltic congress of radiology - BCR : 4-6 October, 2018, Kaunas, Lithuania: online abstract book 2018. ISBN 9786099575063. p. 61-62. 
  2. Gelžinienė G. Outcome of childhood-onset epilepsy: transition to adulthood // Neurologijos seminarai = Seminars in neurology : BALCONE 2018 - 9-asis Baltijos šalių neurologijos kongresas = 9th Baltic Congress of Neurology : Kaunas, Lietuva 2018 m. rugsėjo 6-8 d. = September 6-8, 2018, Kaunas, Lithuania : mokslinė programa ir pranešimų santraukos = scientific program and abstracts. ISSN 1392-3064. eISSN 2424-5917. 2018, t. 22, Nr. 3(77), no. OP17, p. 241. [IndexCopernicus]
  3. Stonkutė R,  Karandienė J, Endzinienė M. The patients with epilepsy: quality of life // Neurologijos seminarai = Seminars in neurology : BALCONE 2018 - 9-asis Baltijos šalių neurologijos kongresas = 9th Baltic Congress of Neurology : Kaunas, Lietuva 2018 m. rugsėjo 6-8 d. = September 6-8, 2018, Kaunas, Lithuania : mokslinė programa ir pranešimų santraukos = scientific program and abstracts. Vilnius : Rotas. ISSN 1392-3064. eISSN 2424-5917. 2018, t. 22, Nr. 3(77), no. PP24, p. 278. [IndexCopernicus] 
  4. Žilionytė M, Pranckevičienė A,  Endzinienė M. Public attitudes on social aspects of epilepsy reflected on internet portals // Neurologijos seminarai = Seminars in neurology : BALCONE 2018 - 9-asis Baltijos šalių neurologijos kongresas = 9th Baltic Congress of Neurology : Kaunas, Lietuva 2018 m. rugsėjo 6-8 d. = September 6-8, 2018, Kaunas, Lithuania : mokslinė programa ir pranešimų santraukos = scientific program and abstracts. Vilnius : Rotas. ISSN 1392-3064. eISSN 2424-5917. 2018, t. 22, Nr. 3(77), no. PP30, p. 281. [IndexCopernicus] 
  5. Endzinienė M.  Comprehensive management of tuberous sclerosis: what TOSCA registry prompts us? // 14th conference of the Baltic Child Neurology Association (BCNA) : May 18-20, 2017, Riga, Latvia : Program and abstracts / Baltic Child Neurology Association (BCNA). Riga : Baltic Child Neurology Association (BCNA). 2017, p. 12-12. 
  6. Gumbelevičienė L, Borkienė D, Liutkienė G, Endzinienė M, Gleiznienė R, Žvinienė K, Pocevičienė, I, Ašmonienė V. Tuberous sclerosis complex: a review of clinical aspects // 14th conference of the Baltic Child Neurology Association (BCNA) : May 18-20, 2017, Riga, Latvia : Program and abstracts / Baltic Child Neurology Association (BCNA). Riga : Baltic Child Neurology Association (BCNA). 2017, p. 31-31.
  7. Karandienė J, Stonkutė R, Endzinienė M.  The Adolescents and adults with epilepsy: knowledge and quality of life // 14th conference of the Baltic Child Neurology Association (BCNA) : May 18-20, 2017, Riga, Latvia : Program and abstracts / Baltic Child Neurology Association (BCNA). Riga : Baltic Child Neurology Association (BCNA). 2017, p. 36-36. 
  8. Endzinienė M, Gumbelevičienė L, Jonuškaitė D, Praninskienė R, Čerkauskienė R. Efficacy and safety of everolimus treatment in tuberous sclerosis complex: Lithuanian experience //14th International Child Neurology Congress (ICNC 2016) : 1-5 May 2016 Amsterdam, the Netherlands : poster abstract book / International Child Neurology Association (ICNA). Amsterdam : International Child Neurology Association. 2016, p. 154-154, no. ICNC-0762. [M.kr.: 06B
  9. Genc D, Vaičienė-Magistris  N, Liutkienė G. Epilepsy with phantom absences: long-term follow-up // 14th International Child Neurology Congress (ICNC 2016): 1-5 May 2016 Amsterdam, the Netherlands : poster abstract book / International Child Neurology Association (ICNA). Amsterdam: International Child Neurology Association. 2016, p. 60, no. ICNC-0280.

Other publications: 

Clinical practice guidelines
„Vaikų tuberozinė sklerozė: diagnostika, gydymas, ilgalaikė stebėsena“ (in Lithuanian, “Diagnosis, treatment and long-term follow up of childhood tuberous sclerosis“ (prepared as part of the EU/Lithuanian Ministry of Health project “Establishment of Pediatric Rare Diseases Competence Centre at the Hospital of Lithuanian University of Health Sciences Kauno klinikos”, approved by Lithuanian University of Health Sciences, Vilnius University, Lithuanian Child Neurology Association, and  Lithuanian Academy of Childhood Disability). Authors:  Endzinienė M, Gumbelevičienė L, Masalskienė J, Kaunas 2018.
Protocols approved by the Ministry of Health, Republic of Lithuania (in Lithuanian): https://sam.lrv.lt/diagnostikos-gydymo-metodikos-ir-rekomendacijos/diagnostikos-ir-gydymo-protokolai (pilnas tekstas: “23 rizikingiausi vaikų ligų srities diagnostikos ir gydymo protokolai (spausti čia, išsiskleis suglaudintas failas“):
-    „VAIKŲ EPILEPSIJOS DIAGNOSTIKA IR GYDYMAS“(„Diagnosis and management of childhood epilepsy“). Authors: Endzinienė M, Vaičienė-Magistris N.  2015.
-    “VAIKŲ TRAUKULIŲ DIAGNOSTIKA IR GYDYMAS” (“Diagnosis and management of seizures in childhood”). Authors: Endzinienė M, Vaičienė-Magistris N. 2015.
-    INFANTILINIŲ SPAZMŲ DIAGNOSTIKA IR GYDYMAS (“Diagnosis and management of infantile spasms”). Authors: Vaičienė-Magistris N, Endzinienė M.

Other publications
Printed educational material for patients and families (“Epilepsy”, “Childhood Epilepsy”, „Women and Epilepsy, Part 1-3,“Tuberous Sclerosis”, etc.).
Translation into Lithuanian and adaptation of The Modular Service Package Epilepsy (MOSES) [authors Baier H, Dennig D, Geiger-Ries M, et al].

Head assoc. prof. Margarita Pileckytė
Tel. +37037327105
El. p. margarita.pileckyte@kaunoklinikos.lt

Centre of Rare and Complex Connective Tissue Diseases was established in 2020. The main clinical work – diagnostics and treatment is conducted at the Department of Rheumatology and covers over 17,633 outpatient appointments with more than 936 hospitalizations per year.

The Center closely collaborates with others departments of the Hospital, especially with the Departments of Immunology, Genetics, Cardiology, Pulmonology, Nephrology, Pediatric, Pathology, etc.

The Center provides clinical expertise in management of different rare connective tissue diseases and vasculitidies, such as systemic sclerosis, mixed connective tissue disease, idiopathic inflammatory myopathies, IGG 4 related diseases, relapsing polychondritis, Sjogrens syndrome, systemic lupus erythematosus, antiphospholipid syndrome, undifferentiated connective tissue disease, granulomatosis et polyangitis, large cell vasculitis and many others.

The multidisciplinary team of professionals provides access to specialized medical, surgical and all kind of instrumental assessment and treatment of these disorders. A wide spectrum of instrumental, immunological and pathological assessments are available at the Center. The Center also provides a full range of rehabilitation and care for patients.

The Center for Rare Connective Tissue and Musculoskeletal diseases is also a teaching center that actively participates in national and international projects, registries and implements scientific programs in the field of rare connective tissue and Musculoskeletal diseases.

Since 2020, the Center is an associated national center in ERN ReCONNET– European Reference Network for Rare Connective Tissue Diseases and Musculoskeletal Diseases.

Head: Rasa Traberg
​Clinical geneticist
Phone: +37037787394
E-mail: rasa.traberg@kaunoklinikos.lt

The Center for Rare Bone diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos has been established in 2020. The routine clinical work is conducted in several departments in the hospital. Diagnostic procedures are provided in Department of Genetics and molecular and medicine and department of radiology. Various treatment modalities are provided at the Department of Children Surgery Paediatric Orthopedics-Traumatology division and Department of Orthopedics.

The patients with rare bone disease are consulted in the other departments in the hospital: Dental and Oral Pathology, Plastic and Reconstructive Surgery, Endocrinology, Pediatrics, Neurology, Neonatology, Neurosurgery, Rehabilitation, Pediatric Rehabilitation, Anaesthesiology, Laboratory medicine, Obstetrics and Gynaecology, Ophthalmology, Maxillofacial Surgery, Nephrology, Rheumatology, Ophthalmology, Pulmonology, Otorhinolaryngology, and others.

Department of Radiology is the largest radiological diagnostic department in Lithuania with concentrated modern radiological diagnostic equipment - digital X-ray machines, 10 units of ultrasound diagnostic equipment, four CTs, three MRI (magnetic resonance imaging) machines, three gamma cameras, angiography and bone densitometry (DXA) devices. Department of Radiology is a modern, broad-based unit with all modern methods of radiological investigation.

The main purpose of the Department is implementation of up to date, science based radiological methods for diagnosis and treatment of rare bone diseases.

Department of Genetics and Molecular medicine provide state of the art molecular diagnostic methods for patients with rare bone disorders. The department consist of Clinical genetics division and Laboratory division. There are Cytogenetics laboratory, Molecular genetics laboratory and Biochemical genetics laboratory. The Molecular genetics laboratory is equipped by different methods of PCR, sequencing, New generation sequencing machines and high qualified personnel to ensure careful molecular diagnostics for rare bone disease. Mass spectrometry method also is established in Biochemical genetics department. 

Orthopedic surgeons take care of paediatric and adult patients and perform almost all required procedures for the rare bone disorders. Modern management methods are provided for bone fragility disorders: telescopic intramedullary needles, synthetic bone replacement etc. Personalised guides are used for the complex surgeries in order to diminish traumatism. Pediatric orthopedic surgeons are pioneers in using the Ponsee method in treating foot deformities and support it in Lithuania. 

The Center for Rare Bone diseases at the Hospital of Lithuanian University of Health Sciences Kauno klinikos is also a teaching center that provide education for students, residents, and fellow colleagues about rare bone disorders. Members of the center also collaborate with foreign specialist to provide state of the art diagnostic and treatment options.

Since 2020, the Center is an affiliated national member in ERN BOND – European Reference Network on Rare Bone disorders.

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