Linking the Center for International Blood and Marrow Transplant Research Registry to the California Cancer Registry and California Hospital Patient Discharge Data
Year: 2022
Type: article
Study design: Observational Study
Abstract: Advances in hematopoietic cell transplantation (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, providing detailed data reported by HCT centers on transplantation-related factors and key outcomes. This study was conducted to evaluate the robustness of CIBMTR outcome data and assess health-related outcomes and healthcare utilization among HCT recipients. We linked data from the CIBMTR for California residents with data from 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 used 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 registered with the CIBMTR who underwent autologous or allogeneic HCT for hematologic malignancy between 1991 and 2016, 89.0% were matched to the CCR and/or PDD (n = 17,707 [77.9%] for both, n = 1179 [5.2%] for the CCR only, and n = 1342 [5.9%] for the PDD only). Unmatched patients were slightly more likely to have undergone a first autologous HCT than an allogeneic HCT (12.6% versus 9.0%), to have a larger number of missing linkage identifiers, and to have undergone HCT prior to 2010. Among the patients reported to the CIBMTR who matched to the CCR, 85.7% demonstrated concordance of both hematologic malignancy type and diagnosis date across data sources. This linkage presents unparalleled opportunities to advance our understanding of HCT practices and patient outcomes.
Institutions: University of California Davis Medical Center, UC Davis Comprehensive Cancer Center, University of California, Davis, National Institutes of Health, National Cancer Institute, Division of Cancer Epidemiology and Genetics, National Marrow Donor Program, Nationwide Children's Hospital, Stanford University
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,650
Funders: Amgen, Bristol-Myers Squibb, Pfizer, Astellas Pharma US, AstraZeneca, GlaxoSmithKline, Merck, Sanofi, California Department of Public Health, Gilead Sciences, University of Southern California, HistoGenetics, Novartis Pharmaceuticals Corporation, CSL Behring, StemCyte, Medical College of Wisconsin, Actinium Pharmaceuticals, Vertex Pharmaceuticals, Jazz Pharmaceuticals, TG Therapeutics, Mallinckrodt Pharmaceuticals, Atara Biotherapeutics, CareDx, bluebird bio, Adaptive Biotechnologies, BeiGene, Incyte, Omeros Corporation, Kiadis Pharma, Kyowa Hakko Kirin, Astellas Pharma, Swedish Orphan Biovitrum, MorphoSys, Medac, National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration, U.S. Public Health Service, University of California, Davis, University of California, San Francisco, Takeda Oncology, Pharmacyclics, Legend Biotech, National Heart, Lung, and Blood Institute, Office of Naval Research, National Cancer Institute, National Institute of Allergy and Infectious Diseases, National Center for Chronic Disease Prevention and Health Promotion, National Center for Advancing Translational Sciences, Comprehensive Cancer Center, University of California, Davis
Awards: G1352184354, G1360182821, G1387388519, G1395202410, G1666956106, G2075359013, G2337224928, G2508485288, G2539821724, G2551907125, G2612351997, G26190906, G279418419, G2961578194, G3033882165, G3133815401, G3448447748, G3467199957, G3509688676, G3669704242, G3825486175, G3987779641, G4332884407, G4428815567, G4664739311, G4854421162, G4878091559, G504639888, G5601524489, G5778816553, G6238506038, G6659488911, G671936517, G6904952899, G6951404960, G6979277618, G7290139498, G7409959533, G7938659809, G7949979095, G8083727551, G8380263711, G8509442309, G8666848461, G8871973681, G8876996369, Cancer Center Support Grant P30, A Data Resource for Blood and Marrow Transplants and Adoptive Cellular Therapy Research, Studies of Populations Exposed to Therapeutic Medical Radiation and Other Agents, G946791773
OpenAlex ID: W4297375515