ESPN/ERA-EDTA Registry

European Registry for Children on Renal Replacement Therapy

 

European Society for Paediatric Nephrology
European Renal Association - European Dialysis and Transplant Association
Department of Medical Informatics
Academic Medical Center
European Union

Funding

The ESPN/ERA-EDTA Registry is kindly supported by the ERA-EDTA and the ESPN. In 2013, the ESPN/ERA-EDTA Registry has received funding from the European Union, in the framework of the Health Programme.

Between 2007 and 2010 the ESPN/ERA-EDTA registry received funding from the NephroQUEST project. With this money, the registry could start and a part-time Registry coordinator could be financed. The ESPN used its savings and received unrestricted donations from AMGEN and the ERA-EDTA for the funding of the part-time coordinator.

Since 2010, the ESPN/ERA-EDTA registry is supported by the ERA-EDTA and the ESPN. The ERA-EDTA does not play a role in the preparation of the manuscripts, analyses of the data or decision to publish any of the projects. The ESPN used its savings to contribute to the grant by the ERA-EDTA. The ESPN has also provided travel grants (2,400 EURO in total) allowing the Registry Office members to present their work at international conferences. Since 2013, the ESPN uses its savings to contribute with an unrestricted grant for the support of the Registry.

Furthermore, for special research projects we are indebted for the funding of the following projects.

(1) As part of a special grant by the European Union in the framework of the Health programm, special studies on increasing knowledge on health care quality and reduction of practice variation and the challenges of rare kidney diseases could be carried out. Enrico Vidal, a paediatric nephrologist from Italy visited the AMC to perform analyses on very young children with End-stage Kidney disease and he compared treatment strategies. Tuulla Hollta, a paediatric nephrologist from Finland analysed data comparing the outcomes of patients with Finnish type nephropathy in Finland with the outcomes in other countries. Finally Djalila Mehkali, pediatric nephrologist in Belgium, studies the treatment strategies in patients with Autosomal Recessive Polycystic Kidney disease. These projects would not have been possible without the support by the European union.

(2) Jerome Harambat, a paediatric nephrologist from France, received a grant of from the QUEST (QUality European Studies) fund to perform a one-year internship from November 2010 to November 2011. He published four papers on various topics, including one on primary hyperoxaluria, transplantation policies, final body height after paediatric ESRD, and an educational review.

(3) Danilo Lofaro, a PhD student from Italy started his 6-month internship from February 2012 onwards at the Registry. He has received a short-term ERA-EDTA fellowship grant.

(4) Elke Wuhl, a paediatric nephrologist from Germany, also received a short-term ERA-EDTA fellowship grant. to perform a one-month internship in July 2011 at the Registry. Her work was on congenital anomalies of the kidney and urinary tract and one paper has been submitted.

(5) Leah Krischock, a paediatric nephrologist from the United Kingdom, visited the Registry for 1 week to perform two studies on anaemia in dialysis and transplant patients. She received a grant from the ESPN to perform this internship. Her continuing work on this project has resulted in two papers.

(6) Dinara Galiyeva, a paediatrician from Kazakhstan, received a short-term ERA-EDTA fellowship grant to visit the Registry for 3 months in 2015. As part of her PhD thesis, she performed a study on the prevalence of cardiovascular risk factors in patients with ESRD.

(7) Michael Boehm, a paediatric nephrologist from Austria spent 2 months at the Registry tor work on a project of vascular access for paediatric haemodialysis patients. His work was funded by two grants, one from the Austrian Society for Pediatrics and one from the German Society of Pediatric nephrology.

European Renal Association - European Dialysis and Transplant Association European Society for Paediatric Nephrology European Union