Second Programme of Community action in the Field of Health 2008-2013
Every year about 9 children per million children develop end-stage kidney disease (ESKD) and require dialysis or a kidney transplant. ESKD is a rare condition, and its treatment is complex and expensi...
Every year about 9 children per million children develop end-stage kidney disease (ESKD) and require dialysis or a kidney transplant. ESKD is a rare condition, and its treatment is complex and expensive. Low patient numbers per country complicate clinical epidemiological research and hamper the development of evidence-based guidelines. This results in large variation of treatment practices and outcomes across Europe. Therefore, the European Society for Paediatric Nephrology (ESPN) and the European Renal Association and European Dialysis and Transplantation Association (ERA-EDTA) have initiated the ESPN/ERA-EDTA Registry. This specialized network collects prospective data on all European children on dialysis or with a kidney transplant.
The Academic Medical Center (AMC) in Amsterdam, the Netherlands, one of the world`s leading medical centres, hosts the ESPN/ERA-EDTA registry and takes care of its financial management.
The ESPN/ERA-EDTA Registry MISSION is to provide high-quality information on all European children on dialysis or with a kidney transplant.
To achieve this mission, we pursue the following activities:
(1) Collect standardized data on children on dialysis or with a kidney transplant from 35 European countries on a yearly basis;
(2) Regularly publish demographic information on paediatric ESKD;
(3) Perform research projects focusing on
- Transnational differences in paediatric ESKD treatment, aiming at reducing health inequalities
- Rare diseases leading to ESKD in children
- Defining optimal strategies to harmonize and reduce practice variation in ESKD management
The demographic information and research results are disseminated online, emailed to all members and contributors, published in high-quality medical journals and presented at national and international congresses.
Covering a population of 630 million in 35 European countries, the ESPN/ERA-EDTA registry is the world`s largest population-based registry for children with ESKD. Our VISION is to provide access to high quality, evidence-based clinical care to all European children.
Start date: 01/01/2013 - End date: 01/01/2014
Call: Promote Health (Hp-2012)