Linking disease registries and nationwide healthcare administrative databases: the French renal epidemiology and information network (REIN) insight

Abstract

Background: Record linkage is increasingly used in health research worldwide. Combining the patient information available in healthcare, administrative and clinical databases broadens the research perspectives, particularly for chronic diseases. Recent guidelines highlight the need for transparency on the used record linkage processes and the extracted data to be used by researchers. Methods: Therefore, the aim of this study was to describe the deterministic iterative approach used to link the French Epidemiology and Information Network (REIN), a French national End-Stage Renal Disease registry, with the Système National des Données de Santé (SNDS), a French nationwide medico-administrative healthcare database. Results: Among the 22,073 patients included in the REIN registry who started renal replacement therapy between 2014 and 2015 in France, 19,223 (87.1%) were matched with patients in the SNDS database. Comparison of matched and unmatched patients confirmed the absence of any major selection bias. Then, the record linkage was evaluated using the comorbidity status (diabetes). Conclusions: This fast and efficient method of record linkage with pseudonymized data and without unique and direct identifier might inspire other research teams. It also opens the path for new research on chronic kidney disease.

Use of administrative record linkage to measure medical and social risk factors for early developmental vulnerability in Ontario, Canada

“…The overall linkage rate for the EDI and RPDB data was comparable to other record linkage studies using health and administrative data [ 25 , 40 , 41 ]. The linkage statistics are important for understanding potential biases in future studies using school-based data linked to health data and are increasingly required by researchers for publication [ 42 ].…”

“…In addition, our results showed that children with three or more social risk factors, regardless of the number of medical risk factors had a greater proportion who were vulnerable compared to children with any number of medical risk factors. The overall linkage rate for the EDI and RPDB data was comparable to other record linkage studies using health and administrative data [25,40,41]. The linkage statistics are important for understanding potential biases in future studies using school-based data linked to health data and are increasingly required by researchers for publication [42].…”

Social Deprivation Is Associated With Lower Access to Pre-emptive Kidney Transplantation and More Urgent-Start Dialysis in the Pediatric Population

“… 16 It was based on a linkage between the REIN registry and the French national health care administrative database, which have recorded all medical information since January 1, 2008. 16 , 17 The date of referral was the earliest date found among the following 3 types of events: (i) the first nephrology-related prescription drug (any CKD-related drug); (ii) the first hospitalization with a nephrology diagnostic (CKD-compatible diagnosis, not acute kidney injury or pyelonephritis); or (iii) the first consultation with a nephrologist. 16 A child was defined as having a late referral when the date of referral was within the 3 months preceding dialysis initiation.…”

Predialysis Care Trajectories of Patients With ESKD Starting Dialysis in Emergency in France

“…To get that information, the 2015 incident patients identified in REIN were matched to the SNDS database using an iterative deterministic record linkage procedure. 24 The SNDS database covers 99% of the population in France and collects data on 1) the reimbursement of ambulatory health care consumption (e.g., medical consultations, biological tests, and drug delivery) and 2) hospital activity (i.e., inpatient and outpatient stays, diagnoses, procedures, and length of stay). 25 Unmatched patients from the REIN registry with the SNDS database and patients without information on the dialysis start condition (EDS or PDS) were excluded.…”