Augmenting the Unites States transplant registry with external mortality data: A moving target ripe for further improvement

Samantha M Noreen; Rachel E Patzer; Sumit Mohan; Jesse D Schold; Grace R Lyden; Jonathan Miller; Scott Verbeke; Darren Stewart; Amber R Fritz; Maureen McBride; Jon J Snyder

doi:10.1016/j.ajt.2023.09.002

Augmenting the Unites States transplant registry with external mortality data: A moving target ripe for further improvement

Am J Transplant. 2024 Feb;24(2):190-212. doi: 10.1016/j.ajt.2023.09.002. Epub 2023 Sep 12.

Authors

Affiliations

¹ United Network for Organ Sharing, Richmond, Virginia, USA. Electronic address: samantha.noreen@unos.org.
² Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, Georgia, USA; Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA; Health Services Research Center, Emory University School of Medicine, Atlanta, Georgia, USA; Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA.
³ Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University, New York, USA; Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, USA.
⁴ Department of Surgery, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA; Department of Epidemiology, Colorado School of Public Health, University of Colorado Anschutz, Aurora, Colorado, USA.
⁵ Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA.
⁶ United Network for Organ Sharing, Richmond, Virginia, USA.
⁷ Department of Surgery, NYU Langone Health, New York, New York, USA.
⁸ Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA; Department of Medicine, Hennepin Healthcare, University of Minnesota, Minneapolis, Minnesota, USA; Department of Epidemiology and Community Health, University of Minnesota, Minneapolis, Minnesota, USA.

PMID: 37704059
DOI: 10.1016/j.ajt.2023.09.002

Abstract

The Organ Procurement and Transplantation Network conducts a robust death verification process when augmenting the United States transplant registry with external sources of data. Process enhancements added over 35,000 externally verified deaths across waitlist candidates and transplant recipients for all organs beginning in April 2022. Ninety-four percent of added posttransplant deaths occurred beyond 5 years posttransplant, and over 74% occurred beyond 10 years. Deceased donor solid organ recipients transplanted from January 1, 2010, through October 31, 2020, were analyzed from January and July 2022 Organ Procurement and Transplantation Network Standard Transplant Analysis and Research and the Scientific Registry of Transplant Recipients Standard Analysis Files to quantify the impact of including vs excluding unverified deaths (not releasable to researchers) on posttransplant patient survival estimates. Across all organs, 1- and 5-year posttransplant survival rates were not substantially impacted; meaningful differences were observed in 10-year survival among kidney recipients. These findings bear important implications for anyone who utilized transplant registry data to examine long-term outcomes prior to the updated verification process. Users of transplant surveillance data should interpret results of long-term outcomes cautiously, particularly differences across subpopulations, and the transplant community should identify ways to improve data quality and minimize the reporting burden on transplant institutions.

Keywords: OPTN; SRTR; Standard Analysis File (SAF); Standard Transplant Analysis and Research (STAR); death verification; outcomes; research.

MeSH terms

Humans
Registries
Survival Rate
Tissue Donors
Tissue and Organ Procurement*
Transplant Recipients
United States / epidemiology