Abstract

Advances in hematopoietic cell transplant (HCT) have substantially improved patient survival, increasing the importance of studying outcomes and long-term adverse effects in the rapidly growing population of HCT survivors. Large-scale registry data from the Center for International Blood and Marrow Transplant Research (CIBMTR) are a valuable resource for studying mortality and late effects after HCT, with detailed data reported by HCT centers on transplant-related factors and key outcomes.To evaluate the robustness of CIBMTR outcome data and to assess health-related outcomes and healthcare utilization among HCT recipients, we linked data from the CIBMTR for California residents with the population-based California Cancer Registry (CCR) and hospitalization information from the California Patient Discharge Database (PDD).In this retrospective cohort study, probabilistic and deterministic record linkage utilized key patient identifiers, such as social security number, zip code, sex, birth date, hematologic malignancy type and diagnosis date, and HCT type and date.Among 22,733 patients in the CIBMTR who received autologous or allogeneic HCT for hematologic malignancy during 1991-2016, 89.0% were matched to the CCR and/or PDD (N=17,707 [77.9%] both; N=1179 [5.2%] CCR only; N=1342 [5.9%] PDD only). Unmatched patients were slightly more likely to have a first autologous (12.6%) than allogeneic (9.0%) HCT, a higher number of missing linkage identifiers, and to have received their HCT occurring prior to 2010. Among the patients reported to CIBMTR who matched to CCR, 85.7% demonstrated concordance of both hematologic malignancy type and diagnosis date across data sources.This linkage presents unparalleled opportunities to advance understanding of HCT practices and patient outcomes.

View details for DOI 10.1016/j.jtct.2022.09.016

View details for PubMedID 36174935