1. Kitty Jager & Anneke Kramer, Jane Tizard, Enrico Verrina, Vianda Stel and Karlijn van Stralen On behalf of he ERA-EDTA and ESPN Registry Committees ERA-EDTA Registry, Dept. Medical Informatics Academic Medical Center, Amsterdam 42 nd Annual meeting ESPN, Lyon –France 11-14 September 2008 Paediatric Registry of CRI: an ESPN and ERA-EDTA common effort

2. Paediatric data in the ERA-EDTA Registry Adult renal registries Limited number of registries affiliated with the ERA-EDTA Registry include paediatric data High quality data BUT Simple, i.e. only little detail and lacking data specifically important for children

3. Paediatric data in the ERA-EDTA Registry van der Heijden et al. 2004

5. Kramer A et al. Characteristics and Survival of Young Adults who started Renal Replacement Therapy during Childhood. NDT in press AimTo describe patient characteristics and determine the risk factors for mortality of young adults who started RRT in childhood. MethodsYoung adults in 9 renal registries who had started RRT during childhood and turned 18 years between 1985 and 2004 18th birthdayStart of RRT Young adults who started RRT during childhood Paediatric data in the ERA-EDTA Registry Kramer et al. in press

6. Paediatric data Young adults who started RRT during childhood Kramer A et al. Characteristics and Survival of Young Adults who started Renal Replacement Therapy during Childhood. NDT in press Results N = 1777 Young adults on RRT added 1.5% to the number of incident adult patients entering adult RRT services per year

7. Trend in PRD Young adults who started RRT during childhood

8. Treatment modality at the start of RRT Young adults who started RRT during childhood

9. Patient Survival and Life Expectancy by treatment modality at 18th birthday Patient survival does NOT depend on PRD or on time on RRT before 18 yrs It does depend on treatment modality at 18th birthday 38 yrs 63 yrs 80 yrs yrs Life Expectancy

10. Paediatric data in the ERA-EDTA Registry Work in progress 1. ‘The effect of timing of renal transplantation on survival of children starting renal replacement therapy’ Background Former studies on transplant survival only included patients who actually received a kidney transplant and therefore could only examine the survival after transplantation Aim To estimate the effect of timing of the first renal transplantation on patient survival taking into account the survival on dialysis before transplantation 2. Dialysis outcomes among pediatric patients by dialysis modality With USRDS, CORR and ANZDATA

11. ESRD in children and young adults The need for a common effort Rare disease (EC definition – prevalence < 500 pmp) –To perform studies of sufficient sample size a strong collaborative research network is needed To increase comparability of data and to perform collaborative studies –Selection and standardization of data collection is needed

12. QUality European STudies … aiming at the improvement of the quality of ESRD care... NephroQUEST Selection and standardization of clinical performance indicators Automated data extraction Development of new registries The ERA-EDTA QUEST initiative Collaborative studies Anaemia Cardiovascular risk Bone-mineral Dialysis adequacy

13. Selection and development of comparable performance indicators 1. Selection based on relevance modifiable in guidelines feasibility of data collection 2. Prioritization 3. Standardization timing method of assessment units categories ClinicalChair Cardiovascular problems in ESRDChristoph Wanner AnaemiaFrancesco Locatelli Dialysis AdequacyJeroen Kooman Ca, P & BoneJorge Cannata Methodological Electronic data extractionReinhard Kramar Coding and DefinitionsKeith Simpson Working Groups 6

14. Selection and development of comparable performance indicators → ESPN database

15. A collaborative effort by ESPN and ERA-EDTA - Thank you