title: Overview of the Canadian pediatric end-stage renal disease database.
abstract: BACKGROUND
  Performing clinical research among pediatric end-stage renal disease patients is challenging. Barriers to successful initiation and completion of clinical research projects include small sample sizes and resultant limited statistical power and lack of longitudinal follow-up for hard clinical end-points in most single center studies.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Pediatric Nephrology, Department of Pediatrics, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary T3B 6A8, Canada. s.samuel@albertahealthservices.ca
authors.forename: Susan M
authors.initials: SM
authors.lastname: Samuel
authors.forename: Marcello A
authors.initials: MA
authors.lastname: Tonelli
authors.forename: Bethany J
authors.initials: BJ
authors.lastname: Foster
authors.forename: Alberto
authors.initials: A
authors.lastname: Nettel-Aguirre
authors.forename: Yingbo
authors.initials: Y
authors.lastname: Na
authors.forename: Robert
authors.initials: R
authors.lastname: Williams
authors.forename: Andrea
authors.initials: A
authors.lastname: Soo
authors.forename: Brenda R
authors.initials: BR
authors.lastname: Hemmelgarn
mesh_terms: D000293:Adolescent; D002170:Canada / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D003625:Data Collection; D016208:Databases, Factual; D005260:Female; D005500:Follow-Up Studies; D017052:Hospital Mortality; D006801:Humans; D015994:Incidence; D007223:Infant; D007676:Kidney Failure, Chronic / Q000453:epidemiology* / Q000628:therapy; D008297:Male; D010351:Patient Discharge; D012042:Registries; D012307:Risk Factors; D012959:Socioeconomic Factors; D016896:Treatment Outcome; D055815:Young Adult
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