Overview of the Canadian pediatric end-stage renal disease database

Existing longitudinal organ failure disease registry and administrative health datasets available within a universal access health care system can be used to study outcomes of end-stage renal disease among pediatric patients in Canada. To construct the Canadian Pediatric End-Stage Renal Disease database, registry data were linked to administrative health data through deterministic linkage techniques creating a research database which consists of socio-demographic variables, clinical variables, all-cause hospitalizations, and relevant outcomes (death and renal allograft loss) for this patient population. The research database also allows study of major cardiovascular events using previously validated administrative data definitions.Organ failure registry linked to health administrative data can be a powerful tool to perform longitudinal studies in pediatric end-stage renal disease patients. The rich clinical and demographic information found in this database will facilitate study of important medical and non-medical risk factors for death, graft loss and cardiovascular disease among pediatric end-stage renal disease patients.End-stage renal disease (ESRD) is rare in childhood. ESRD incidence rates in children range from 6.9 to 21.8 per million age related population in the 0-4 year old age group and 15-19 year old age group respectively [1]. As a result, individual pediatric nephrology centers have a limited number of patients receiving renal replacement therapy at any given time. Therefore, it is challenging for single centers to recruit sufficient numbers of patients to perform adequately powered clinical studies to evaluate treatment and outcomes in this patient population. More importantly, outcomes such as death and major cardiovascular events which require longitudinal follow-up over long periods of time are rarely documented within pediatric centers, because pediatric ESRD patients have usually been transferred to adult oriented care centers before these outco