Cromwell Elizabeth A, Ahn Yoon Son, Johnson Patrick J, Ramos Kathleen J, Freeman A Jay, Faro Albert, Snyder Jon J
Patient Registry Research, Cystic Fibrosis Foundation, Bethesda, MD, USA.
Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, MN, USA.
J Cyst Fibros. 2025 Jan;24(1):112-117. doi: 10.1016/j.jcf.2024.09.015. Epub 2024 Oct 2.
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.
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 transplant. We summarized CFFPR-reported characteristics for lung and liver transplants in the year prior to transplant.
A total of 7,594 individuals who participated in the CFFPR matched SRTR records with approximately 75% having at least one transplant record in SRTR. Over 97% of the matched population had a CF diagnosis reported to SRTR. In total, 5,253 people were identified as lung transplant recipients and 499 as liver transplant recipients in SRTR. Clinical characteristics for lung and liver transplants were consistent with the epidemiology of transplantation for people with CF.
Linkage of the two data sources was successful, with high agreement between them supporting the use of the matched population as a valid resource to study transplantation in CF, particularly leveraging pre-transplant characteristics (collected in CFFPR) with detailed transplant data (collected in SRTR).
囊性纤维化基金会患者登记处（CFFPR）保存着在囊性纤维化基金会认可的护理中心接受治疗的囊性纤维化（CF）患者的临床数据，包括实体器官移植史。移植受者科学登记处（SRTR）数据库是一个与器官移植相关的国家数据集合，支持评估实体器官移植候选者和受者结局的研究。
使用一种算法将CFFPR中的个体与SRTR记录进行匹配，该算法比较姓名、社会保障号码的最后四位数字、出生日期和死亡日期。我们通过总结两个数据源之间按器官以及登记或移植年份划分的移植状态一致程度来评估匹配质量。我们总结了移植前一年CFFPR报告的肺移植和肝移植特征。
共有7594名参与CFFPR的个体与SRTR记录匹配，约75%的个体在SRTR中有至少一条移植记录。超过97%的匹配人群向SRTR报告了CF诊断。在SRTR中，总共确定了5253人为肺移植受者，499人为肝移植受者。肺移植和肝移植的临床特征与CF患者的移植流行病学一致。
两个数据源的关联是成功的，它们之间的高度一致性支持将匹配人群用作研究CF移植的有效资源，特别是利用移植前特征（在CFFPR中收集）和详细的移植数据（在SRTR中收集）。
