title: Linking the US transplant registry to administrative claims data: expanding the potential of transplant research.
abstract: OBJECTIVE
  In the United States, data on transplanted and waitlisted patients collected by the Organ Procurement and Transplantation Network (OPTN) have been widely used in transplantation research. Administrative claims data, collected by health plans for reimbursement purposes, are also commonly used in health-services research. This study linked OPTN and private payer claims data to assess the relationship between data elements common to both sources.
  
  
  METHODS
  All transplanted or waitlisted patients in the registry were considered for inclusion. A multistep match algorithm was employed to link OPTN and payer data from years 1995 to 2004. Variables common to both datasets that contained relevant information for similar time periods were compared.
  
  
  RESULTS
  A total of 21,419 solid organ transplant recipients and 8808 waitlist patients were included in the final linked database. Organ type and demographic variable distributions in the linked dataset were similar to the overall OPTN database. Using claims as the reference group, sensitivity and specificity values were on average 0.72 and 0.69, respectively, and were highest for the indicators of immunosuppression use at discharge and follow-up.
  
  
  CONCLUSIONS
  This comparison of payer data with information reported by transplant centers to the OPTN provides important insight into the value of both data sources. Using administrative claims to augment the registry data with utilization and cost information will be useful for evaluation of both economic and clinical endpoints in solid organ transplantation.
authors.affiliation: Health Benchmarks, Inc., Woodland Hills, California, USA.
authors.forename: Amanda S
authors.initials: AS
authors.lastname: Gilmore
authors.forename: J Harold
authors.initials: JH
authors.lastname: Helderman
authors.forename: Jean-Francois
authors.initials: JF
authors.lastname: Ricci
authors.forename: Kira L
authors.initials: KL
authors.lastname: Ryskina
authors.forename: Sandy
authors.initials: S
authors.lastname: Feng
authors.forename: Ning
authors.initials: N
authors.lastname: Kang
authors.forename: Antonio P
authors.initials: AP
authors.lastname: Legorreta
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002675:Child, Preschool; D003625:Data Collection / Q000379:methods*; D016208:Databases, Factual / Q000706:statistics & numerical data*; D004363:Drug Utilization; D005260:Female; D006801:Humans; D007166:Immunosuppressive Agents; D007223:Infant; D007231:Infant, Newborn; D007345:Insurance Claim Review / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D016377:Organ Transplantation / Q000191:economics / Q000706:statistics & numerical data; D012042:Registries / Q000706:statistics & numerical data; D012106:Research / Q000706:statistics & numerical data*; D012680:Sensitivity and Specificity; D009927:Tissue and Organ Procurement / Q000706:statistics & numerical data; D014481:United States; D014850:Waiting Lists
chemical_list: D007166:Immunosuppressive Agents