Linkage of the CF Foundation Patient Registry with the Scientific Registry of Transplant Recipients database.

ABSTRACT:

Background

The Cystic Fibrosis Foundation Patient Registry (CFFPR) maintains clinical data, including history of solid organ transplant, on people with cystic fibrosis (CF) who obtain care at CF Foundation-accredited care centers. The Scientific Registry of Transplant Recipients (SRTR) database is a collection of national data related to organ transplantation that supports research to evaluate solid organ transplant candidate and recipient outcomes.

Methods

Individuals in the CFFPR were matched to SRTR records using an algorithm that compared names, last four digits of social security numbers, date of birth and date of death. We evaluated match quality by summarizing the extent to which transplant status agreed between the two data sources by organ and year of listing or tra

SUBMITTER: Cromwell EA 

PROVIDER: S-EPMC11788025 | biostudies-literature | 2025 Jan

REPOSITORIES: biostudies-literature