Successful linkage of French large-scale national registry populations to national reimbursement data: Improved data completeness and minimized loss to follow-up.

Autor: Didier R; Department of Cardiology, CHRU Brest, 29200 Brest, France., Gouysse M; Clinityx, 78260 Acheres, France., Eltchaninoff H; Department of Cardiology, CHU Rouen, 76000 Rouen, France; RHU STOP-AS, 76000 Rouen, France., Le Breton H; Department of Cardiology, CHU Rennes, 35000 Rennes, France., Commeau P; Department of Cardiology, CHU Nîmes, 30029 Nîmes, France., Cayla G; Department of Cardiology, CHU Nîmes, 30029 Nîmes, France., Glatt N; Clinityx, 78260 Acheres, France., Glatt B; Clinityx, 78260 Acheres, France., Gabbas M; CNAM, 75141 Paris, France., Tuppin P; CNAM, 75141 Paris, France., Liepchitz L; Clinityx, 78260 Acheres, France., Boussac M; CNAM, 75141 Paris, France., Iung B; Department of Cardiology, Hôpital Bichat, Claude-Bernard, AP-HP, 75018 Paris, France., Gilard M; Department of Cardiology, CHRU Brest, 29200 Brest, France; RHU STOP-AS, 76000 Rouen, France. Electronic address: martine.gilard@gmail.com.
Jazyk: angličtina
Zdroj: Archives of cardiovascular diseases [Arch Cardiovasc Dis] 2020 Aug - Sep; Vol. 113 (8-9), pp. 534-541. Date of Electronic Publication: 2020 Jul 22.
DOI: 10.1016/j.acvd.2020.04.006
Abstrakt: Background: Registries, a cornerstone of contemporary medicine, frequently suffer from incomplete documentation and losses to follow-up. By linking data to a single-payer national claims database, national registries may be enriched and the quality enhanced.
Aims: To explore the value of data from the French Système National des Données de Santé (SNDS) as a resource to enhance the quality of registries when combined with data from electronic case report forms, and to assess the power to minimize data gaps and losses to follow-up.
Methods: A probabilistic algorithm was developed to link and match records in the SNDS with patient data from the electronic case report forms of two registries on transcatheter aortic valve implantation: FRANCE-2 and FRANCE-TAVI. The algorithm created patient profiles from transcatheter aortic valve implantation procedures in the SNDS, matching them as closely as possible to the profiles in the registry databases. The objective was to achieve 90% linkage of the populations. The linked database was analysed for completeness and loss to follow-up. For validation, mortality curves for the linked registry cohorts were compared with those for the original populations.
Results: A total of 34,397 unique registries entries were identified, and 89.9% of patients in the SNDS could be linked. Rates of losses to follow-up over 2 years were 1.0% in the linked FRANCE-TAVI population compared with 40.3% based on electronic case report form documentation. For FRANCE-2, 3-year rates of losses to follow-up were 1.7% and 6.1%, respectively. Mortality curves for populations based on SNDS and electronic case report form data were practically superimposable.
Conclusions: Linking data from a single-payer national claims database to national registries using a probabilistic approach is feasible and can close data gaps and practically abolish losses to follow-up in the registry population.
(Copyright © 2020 Elsevier Masson SAS. All rights reserved.)
Databáze: MEDLINE
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