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Progress with the European Society for Paediatric Nephrology (ESPN)/ERA-EDTA Registry for children with established renal failure (ERF).

Tizard EJ, Verrina E, van Stralen KJ, Jager KJ - Nephrol. Dial. Transplant. (2009)

View Article: PubMed Central - PubMed

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Established renal failure (ERF) in children and young adults is considered a rare disease... Single country data may be underpowered to show any differences or effects of treatment and therefore cooperation between countries is essential to improve the outcome of children with ERF... Until 2007 data collection on children and young adults on renal replacement therapy (RRT) in Europe was limited to that of the European Renal Association–European Dialysis and Transplant (ERA–EDTA) Registry... Within the ERA–EDTA Registry data are collected from national and regional renal registries... As these do not always include paediatric patients, data on children have only been available from a limited part of Europe... Over the 20 years studied the relative risk of death for patients starting dialysis or following their first transplant reduced by 36% and 42%, respectively... A paper on the characteristics and survival of young adults who started RRT during childhood has recently been published, and a further study on the effect of timing of transplantation is in progress... Since 2004 preparations have been made for a more comprehensive registry specifically focusing on children, the European Society for Paediatric Nephrology (ESPN)/ERA–EDTA Registry... It was decided that the data collection on children should be expanded not only to include more countries but also to collect much more detailed data on different aspects of ERF management... Initially, established registries from the larger countries were compared to see if a common database could be developed... At the same time the ERA–EDTA Registry set out to develop the QUEST (QUality European STudies) initiative... Together with national renal registries and societies the ERA–EDTA Registry applied to the European Union for a grant, under the name of NephroQUEST, which was subsequently awarded in 2007... The Registry provides the opportunity to study significant numbers of children with rare causes of renal failure... Therefore, all national registries, the paediatric as well as those collecting adult data, are encouraged to develop these links in the near future... Physicians, researchers and others interested in research in paediatric nephrology are highly encouraged to suggest research questions, initiate projects within the ESPN or to visit the ESPN/ERA-EDTA Registry for an internship in paediatric RRT research.

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Countries contributing data to the ESPN/ERA–EDTA Registry.
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Figure 1: Countries contributing data to the ESPN/ERA–EDTA Registry.

Mentions: In 2007 the combined ESPN/ERA–EDTA Registry was officially launched. An epidemiologist was appointed to work with the AMC-based ERA–EDTA Registry and the two ESPN representatives with the ERA–EDTA Registry committee, in order to develop the separate paediatric aspects of the Registry. Forty European countries were contacted via the presidents of national societies or known registry leads and 35 responded favourably to being interested in participating in the future registry. Since then 33 paediatric registries (29 countries) have contributed data (Figure 1). As of September 2008 the Registry had collected data from countries covering a total general population of ∼400 million individuals.


Progress with the European Society for Paediatric Nephrology (ESPN)/ERA-EDTA Registry for children with established renal failure (ERF).

Tizard EJ, Verrina E, van Stralen KJ, Jager KJ - Nephrol. Dial. Transplant. (2009)

Countries contributing data to the ESPN/ERA–EDTA Registry.
© Copyright Policy - creative-commons
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC2727913&req=5

Figure 1: Countries contributing data to the ESPN/ERA–EDTA Registry.
Mentions: In 2007 the combined ESPN/ERA–EDTA Registry was officially launched. An epidemiologist was appointed to work with the AMC-based ERA–EDTA Registry and the two ESPN representatives with the ERA–EDTA Registry committee, in order to develop the separate paediatric aspects of the Registry. Forty European countries were contacted via the presidents of national societies or known registry leads and 35 responded favourably to being interested in participating in the future registry. Since then 33 paediatric registries (29 countries) have contributed data (Figure 1). As of September 2008 the Registry had collected data from countries covering a total general population of ∼400 million individuals.

View Article: PubMed Central - PubMed

AUTOMATICALLY GENERATED EXCERPT
Please rate it.

Established renal failure (ERF) in children and young adults is considered a rare disease... Single country data may be underpowered to show any differences or effects of treatment and therefore cooperation between countries is essential to improve the outcome of children with ERF... Until 2007 data collection on children and young adults on renal replacement therapy (RRT) in Europe was limited to that of the European Renal Association–European Dialysis and Transplant (ERA–EDTA) Registry... Within the ERA–EDTA Registry data are collected from national and regional renal registries... As these do not always include paediatric patients, data on children have only been available from a limited part of Europe... Over the 20 years studied the relative risk of death for patients starting dialysis or following their first transplant reduced by 36% and 42%, respectively... A paper on the characteristics and survival of young adults who started RRT during childhood has recently been published, and a further study on the effect of timing of transplantation is in progress... Since 2004 preparations have been made for a more comprehensive registry specifically focusing on children, the European Society for Paediatric Nephrology (ESPN)/ERA–EDTA Registry... It was decided that the data collection on children should be expanded not only to include more countries but also to collect much more detailed data on different aspects of ERF management... Initially, established registries from the larger countries were compared to see if a common database could be developed... At the same time the ERA–EDTA Registry set out to develop the QUEST (QUality European STudies) initiative... Together with national renal registries and societies the ERA–EDTA Registry applied to the European Union for a grant, under the name of NephroQUEST, which was subsequently awarded in 2007... The Registry provides the opportunity to study significant numbers of children with rare causes of renal failure... Therefore, all national registries, the paediatric as well as those collecting adult data, are encouraged to develop these links in the near future... Physicians, researchers and others interested in research in paediatric nephrology are highly encouraged to suggest research questions, initiate projects within the ESPN or to visit the ESPN/ERA-EDTA Registry for an internship in paediatric RRT research.

Show MeSH