Reference Centre for Rare Kidney Diseases and Malformations of the Urogenital System
Reference Centre for Rare Kidney Diseases and Malformations of the Urogenital System was established in 2015 as an effort to unite healthcare professionals with interest and experience in rare kidney diseases and urinary tract malformations and to improve the care delivered to patients affected by these rare conditions. The Centre is comprised of a multidisciplinary team of pediatric nephrologists, pediatric urologists, adult nephrologists, pathologists, radiologists, geneticists, and other physicians. Close collaboration with adult nephrologists ensures the proper transition of pediatric patients to adult care.
Pediatric nephrologists and urologists in The Centre of Rare Kidney Diseases and Malformations of the Urogenital System have accumulated extensive experience in treating children with rare kidney diseases and urinary tract malformations. It is a team of specialists, servicing the largest number of children with rare kidney diseases and urinary tract malformations. More than 2000 children with rare kidney diseases and more than 6000 children with rare urogenital diseases visit Vilnius University Hospital Santaros Klinikos (VUH SK) Paediatrics Centre and Children’s Surgery, Orthopaedic and Traumatology Centre each year.
VUHSK offers a wide spectrum of diagnostic and treatment services. These include modern genetic diagnostics, advanced radiological investigations, immunological testing, dialysis (hemo and peritoneal) for children of all ages, including neonates, pediatric renal transplantation (incl. ABO-incompatible and highly sensitized patients, children weighing at least 15 kg). We perform on average 3 pediatric renal transplantations each year. The Centre offers a wide range of state-of-the-art pharmacological therapies for children with immune renal diseases.
A modern monitoring and follow-up system has been developed in the Centre. It is used to collect information on newly diagnosed patients, monitor the course of the diseases, and evaluate treatment efficiency. The data in the system is continuously renewed and analyzed.
Since 2017 The Centre of Rare Kidney Diseases and Malformations of the Urogenital System is a member of the European Reference Network ERKNet.
Specialists of The Centre of Rare Kidney Diseases and Malformations of the Urogenital System have published over 80 publications in internationally acclaimed journals, have co-authored 4 books/textbooks, and have published over 100 publications. Specialists of the Centre cooperate internationally with various hospitals and universities in biomedical and clinical studies, aimed at improving the care delivered to the patients.
Pediatric nephrologists in the Centre are partners of the ESCAPE consortium (Heidelberg, Germany) and participate in many of its studies. It is the largest pediatric nephrology research consortium in Europe.
Ongoing research:
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PodoNet – Clinical, Genetic and Experimental Research into Hereditary Diseases of the Podocyte. Clinical database for primary steroid resistant and congenital nephrotic syndrome. (Heidelberg University, Germany) www.podonet.org
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PREDICT – Antibiotic Prophylaxis and Renal Damage In Congenital Abnormalities of the Kidney and Urinary Tract (PREDICT); (prof. A. Jankauskienė – national coordinator) (University of Bologna, Italy);
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4C Study. Cardiovascular Comorbidity in Children with Chronic Kidney Disease. (K. Ažukaitis – regional coordinator). (Heidelberg University, Germany) www.4c-study.org
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ARegPKD. International Registry of Autosomal Polycystic Recessive Kidney Disease. (prof. A. Jankauskienė – regional coordinator). (University of Cologne, Germany) www.aregpkd.org
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ESPN/ERA-EDTA European Registry for Pediatric Nephrology. https://www.espn-reg.org/
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International Pediatric Peritoneal Biopsy Study in Children. (Heidelberg University, Germany)
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ADPedKD. International Registry of Autosomal Dominant Polycystic Kidney Disease (University of Leuven, Belgium). www.adpedkd.org
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GIGA-KIDS. Genomics of IgA-related disorders in kids Study. (Columbia University, USA) gigakids.org
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Calcium balance study in pediatric dialysis patients (Great Ormond Street Hospital, UK)
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European Registry of Dialysis Treatment of Pediatric Acute Kidney Injury (EurAKID) (Bambino Gesù Children's Hospital, Italy)
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BioAlport. Alport syndrome biomarkers (prof. R. Čerkauskienė – regional coordinator) (University of Rostock, Germany)
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TuScCom. Biomarker for Tuberous Sclerosis Complex. (prof. R. Čerkauskienė – regional coordinator) (University of Rostock, Germany)
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International multicenter Fabry disease registry
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International multicenter Mannosidosis registry
The specialists working in the Centre actively cooperate with researchers from Heidelberg University (Germany), University of Cologne (Germany), University Medical Centre Hamburg-Eppendorf (Germany), Great Ormond Street Hospital (London, UK), Columbia University (New York, USA), University of Bologna (Italy), Manchester (UK), University of Leuven (Belgium), University of Cincinnati (USA).
