Data harmonization for collaborative research among MS registries: A case study in employment.


Journal

Multiple sclerosis (Houndmills, Basingstoke, England)
ISSN: 1477-0970
Titre abrégé: Mult Scler
Pays: England
ID NLM: 9509185

Informations de publication

Date de publication:
02 2021
Historique:
pubmed: 13 3 2020
medline: 25 9 2021
entrez: 13 3 2020
Statut: ppublish

Résumé

To assess the feasibility of collaboration and retrospective data harmonization among three multiple sclerosis (MS) registries by investigating employment status. We used the Maelstrom guidelines to facilitate retrospective harmonization of data from three MS registries, including the NARCOMS (North American Research Committee on MS) Registry, German MS Register (GMSR), and United Kingdom MS (UK-MS) Register. A protocol was developed based on the guidelines, and summary-level data were used to combine results. Employment status and a limited set of factors associated with employment (age, sex, education, and disability level) were harmonized. A meta-analytic approach was used to pool estimates using a weighted average of logistic regression estimates and their variances in a random effects model. Employment status, age, sex, education, and disability were mapped. The overall employment rate was 57% (11,143 employed out of 19,562 persons with MS) with the GMSR having the highest proportion of participants employed (66.2%), followed by the UK-MS (55.2%) and NARCOMS (43.0%) registries. As disability level increased, the odds of not being employed increased. Harmonization across registries was feasible. The Maelstrom guidelines provide a valuable roadmap for conducting high-quality harmonization projects. The pooling of data sources has the potential to be an important mechanism for conducting research in MS.

Identifiants

pubmed: 32163003
doi: 10.1177/1352458520910499
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

281-289

Auteurs

A Salter (A)

Division of Biostatistics, Washington University in St. Louis, St. Louis, MO, USA.

A Stahmann (A)

MS Forschungs- und Projektentwicklungs-gGmbH, German MS Register, Hannover, Germany.

D Ellenberger (D)

MS Forschungs- und Projektentwicklungs-gGmbH, German MS Register, Hannover, Germany.

F Fneish (F)

MS Forschungs- und Projektentwicklungs-gGmbH, German MS Register, Hannover, Germany.

W J Rodgers (WJ)

Swansea University Medical School, Swansea, UK.

R Middleton (R)

Swansea University Medical School, Swansea, UK.

R Nicholas (R)

Imperial College London, London, UK.

R A Marrie (RA)

Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.

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Classifications MeSH