The Organ Procurement and Transplantation Network (OPTN) receives data about transplant patient deaths from a range of external sources, as required by the OPTN contract. Following verification, they are considered official OPTN data and added to the official OPTN data registry. Due to process improvement and automation, the OPTN is now able to verify a larger number of patient deaths, ensuring the most accurate data is available to researchers and the community.
As a result of these changes, the April 2022 OPTN standard transplant analysis and research (STAR) file will include approximately 35,000 additional deaths on waiting list candidates and transplant recipients that were not captured in previous data releases. STAR files are limited datasets that contain patient-level information about transplant recipients, deceased and living donors, and waiting list candidates back to Oct. 1, 1987. The STAR file containing national data is produced quarterly. Transplant center-specific STAR files containing OPTN member transplant hospital data are produced monthly for the use of each hospital. The OPTN continuously evaluates the STAR file to contain the most current and complete data reported to the OPTN for use by researchers, quality improvement professionals, and others.
How patient death data is reported to the OPTN
The majority of deaths of patients who are waiting list candidates or transplant recipients are reported to the OPTN by OPTN member organizations, as dictated by OPTN policy, but this reporting is also supplemented by information from other sources. The OPTN and its members use this death information for research and evaluation purposes. The Scientific Registry of Transplant Recipients (SRTR) receives a copy of OPTN verified death information to use in standard analytic files (SAFs) and for analyses such as program specific reports (PSRs). Only verified external deaths are permitted to be released at the individual level.1 Future enhancements to the death verification process will involve the inclusion of living donor deaths.
Requesting data from the OPTN
Anyone may request data from the OPTN. If you are at an OPTN member organization, please submit your data request inside Secure Enterprise. For all other data requests, use this form on the OPTN website, after reviewing data request instructions.
- Wilk AR, Edwards LB, Edwards EB. The Effect of Augmenting OPTN Data With External Death Data on Calculating Patient Survival Rates After Organ Transplantation. Transplantation. 2017 Apr;101(4):836-843. doi: 10.1097/TP.0000000000001448. PMID: 27547866; PMCID: PMC7228603.