title: Comparison of Cancer Diagnoses Between the US Solid Organ Transplant Registry and Linked Central Cancer Registries.
abstract: US transplant centers are required to report cancers in transplant recipients to the transplant network. The accuracy and completeness of these data, collected in the Scientific Registry of Transplant Recipients (SRTR), are unknown. We compared diagnoses in the SRTR and 15 linked cancer registries for colorectal, liver, lung, breast, prostate and kidney cancers; melanoma; and non-Hodgkin lymphoma (NHL). Among 187 384 transplants, 9323 cancers were documented in the SRTR or cancer registries. Only 36.8% of cancers were in both, with 47.5% and 15.7% of cases additionally documented solely in cancer registries or the SRTR, respectively. Agreement between the SRTR and cancer registries varied (kappa = 0.28 for liver cancer and kappa = 0.52-0.66 for lung, prostate, kidney, colorectum, and breast cancers). Upon evaluation, some NHLs documented only in cancer registries were identified in the SRTR as another type of posttransplant lymphoproliferative disorder. Some SRTR-only cases were explained by miscoding (colorectal cancer instead of anal cancer, metastases as lung or liver cancers) or missed matches with cancer registries, partly due to recipients' outmigration from catchment areas. Estimated sensitivity for identifying cancer was 52.5% for the SRTR and 84.3% for cancer registries. In conclusion, SRTR cancer data are substantially incomplete, limiting their usefulness for surveillance and research.
authors.affiliation: Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD.
authors.forename: E L
authors.identifier: 0000-0002-5835-0201
authors.initials: EL
authors.lastname: Yanik
authors.affiliation: Texas Cancer Registry, Texas Department of State Health Services, Austin, TX.
authors.forename: L M
authors.initials: LM
authors.lastname: Nogueira
authors.affiliation: Illinois State Cancer Registry, Illinois Department of Public Health, Springfield, IL.
authors.forename: L
authors.initials: L
authors.lastname: Koch
authors.affiliation: Michigan Cancer Surveillance Program, Michigan Department of Health and Human Services, Lansing, MI.
authors.forename: G
authors.initials: G
authors.lastname: Copeland
authors.affiliation: Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA.
authors.forename: C F
authors.initials: CF
authors.lastname: Lynch
authors.affiliation: New Jersey State Cancer Registry, Cancer Epidemiology Services, New Jersey Department of Health, Trenton, NJ.
authors.forename: K S
authors.initials: KS
authors.lastname: Pawlish
authors.affiliation: Colorado Central Cancer Registry, Colorado Department of Public Health and Environment, Denver, CO.
authors.forename: J L
authors.initials: JL
authors.lastname: Finch
authors.affiliation: New York State Cancer Registry, New York State Department of Health, Albany, NY.
authors.forename: A R
authors.initials: AR
authors.lastname: Kahn
authors.affiliation: University of Hawaii Cancer Center, Honolulu, HI.
authors.forename: B Y
authors.initials: BY
authors.lastname: Hernandez
authors.affiliation: Department of Surgery, Johns Hopkins Medical Institutions, Baltimore, MD.
authors.forename: D L
authors.initials: DL
authors.lastname: Segev
authors.affiliation: Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD.
authors.forename: R M
authors.initials: RM
authors.lastname: Pfeiffer
authors.affiliation: Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation, Minneapolis, MN.
authors.forename: J J
authors.initials: JJ
authors.lastname: Snyder
authors.affiliation: Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation, Minneapolis, MN.
authors.forename: B L
authors.initials: BL
authors.lastname: Kasiske
authors.affiliation: Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD.
authors.forename: E A
authors.initials: EA
authors.lastname: Engels
mesh_terms: D000328:Adult; D003625:Data Collection / Q000592:standards*; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D009369:Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D016377:Organ Transplantation; D011379:Prognosis; D012042:Registries / Q000592:standards*; D014481:United States / Q000453:epidemiology
keywords: Organ Procurement and Transplantation Network (OPTN); cancer/malignancy/neoplasia; clinical research/practice; health services and outcomes research; hematology/oncology