Performance of administrative databases for identifying individuals with multiple sclerosis

Abstract Administrative databases are an alternative to disease registries as a research tool to study multiple sclerosis. However, they are not initially designed to fulfill research purposes. Therefore, an evaluation of their performance is necessary. Our objective was to assess the performance of...

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Main Authors: Pauline Ducatel, Marc Debouverie, Marc Soudant, Francis Guillemin, Guillaume Mathey, Jonathan Epstein
Format: Article
Language:English
Published: Nature Portfolio 2023-10-01
Series:Scientific Reports
Online Access:https://doi.org/10.1038/s41598-023-45384-w
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author Pauline Ducatel
Marc Debouverie
Marc Soudant
Francis Guillemin
Guillaume Mathey
Jonathan Epstein
author_facet Pauline Ducatel
Marc Debouverie
Marc Soudant
Francis Guillemin
Guillaume Mathey
Jonathan Epstein
author_sort Pauline Ducatel
collection DOAJ
description Abstract Administrative databases are an alternative to disease registries as a research tool to study multiple sclerosis. However, they are not initially designed to fulfill research purposes. Therefore, an evaluation of their performance is necessary. Our objective was to assess the performance of the French administrative database comprising hospital discharge records and national health insurance databases in identifying individuals with multiple sclerosis, in comparison with a registry that exhaustively compiles resident multiple sclerosis cases in Lorraine, northeastern France, as reference. We recorded all individuals residing in the Lorraine region who were identified by the administrative database or the registry as having multiple sclerosis from 2011 to 2016. We calculated the Matthews correlation coefficient and other concordance indicators. For identifying individuals with multiple sclerosis, the Matthews correlation coefficient by the administrative database was 0.79 (95% CI 0.78–0.80), reflecting moderate performance. The mean time to identification was 5.5 years earlier with the registry than the administrative database. Administrative databases, although useful to study multiple sclerosis, should be used with caution because results of studies based on them may be biased. Our study highlights the value of regional registries that allow for a more exhaustive and rapid identification of cases.
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spelling doaj.art-7a24b9e1af4e409c9289c1b5cc88cd2a2023-11-26T13:03:32ZengNature PortfolioScientific Reports2045-23222023-10-011311710.1038/s41598-023-45384-wPerformance of administrative databases for identifying individuals with multiple sclerosisPauline Ducatel0Marc Debouverie1Marc Soudant2Francis Guillemin3Guillaume Mathey4Jonathan Epstein5Department of Neurology, Nancy University HospitalDepartment of Neurology, Nancy University HospitalCIC-EC 1433, CHRU, Inserm, Université de LorraineCIC-EC 1433, CHRU, Inserm, Université de LorraineDepartment of Neurology, Nancy University HospitalCIC-EC 1433, CHRU, Inserm, Université de LorraineAbstract Administrative databases are an alternative to disease registries as a research tool to study multiple sclerosis. However, they are not initially designed to fulfill research purposes. Therefore, an evaluation of their performance is necessary. Our objective was to assess the performance of the French administrative database comprising hospital discharge records and national health insurance databases in identifying individuals with multiple sclerosis, in comparison with a registry that exhaustively compiles resident multiple sclerosis cases in Lorraine, northeastern France, as reference. We recorded all individuals residing in the Lorraine region who were identified by the administrative database or the registry as having multiple sclerosis from 2011 to 2016. We calculated the Matthews correlation coefficient and other concordance indicators. For identifying individuals with multiple sclerosis, the Matthews correlation coefficient by the administrative database was 0.79 (95% CI 0.78–0.80), reflecting moderate performance. The mean time to identification was 5.5 years earlier with the registry than the administrative database. Administrative databases, although useful to study multiple sclerosis, should be used with caution because results of studies based on them may be biased. Our study highlights the value of regional registries that allow for a more exhaustive and rapid identification of cases.https://doi.org/10.1038/s41598-023-45384-w
spellingShingle Pauline Ducatel
Marc Debouverie
Marc Soudant
Francis Guillemin
Guillaume Mathey
Jonathan Epstein
Performance of administrative databases for identifying individuals with multiple sclerosis
Scientific Reports
title Performance of administrative databases for identifying individuals with multiple sclerosis
title_full Performance of administrative databases for identifying individuals with multiple sclerosis
title_fullStr Performance of administrative databases for identifying individuals with multiple sclerosis
title_full_unstemmed Performance of administrative databases for identifying individuals with multiple sclerosis
title_short Performance of administrative databases for identifying individuals with multiple sclerosis
title_sort performance of administrative databases for identifying individuals with multiple sclerosis
url https://doi.org/10.1038/s41598-023-45384-w
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