TY - JOUR
T1 - Data harmonization for collaborative research among MS registries
T2 - A case study in employment
AU - Salter, A.
AU - Stahmann, A.
AU - Ellenberger, D.
AU - Fneish, F.
AU - Rodgers, W. J.
AU - Middleton, R.
AU - Nicholas, R.
AU - Marrie, R. A.
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: NARCOMS (North American Research Committee on MS) is a project of the Consortium of MS Centers (CMSC) and is supported by the CMSCs and the Foundation of the CMSC. GMSR is a project of the German MS Society. It is supported by the German MS Society’s Trust and the MS Society itself. The United Kingdom MS (UK-MS) Register is funded by the MS Society and operated and managed by Swansea University Medical School.
Funding Information:
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: A Stahmann has received institutional grants by Merck and Novartis, outside the submitted work. R Nicholas reports non-financial support from Roche, personal fees and non-financial support from Novartis, personal fees and non-financial support from Biogen, and grants from UK Multiple Sclerosis (UK-MS) Society, outside the submitted work; works unpaid on National Institute for Health and Care Excellence. RA Marrie receives research funding from Canadian Institutes of Health Research (CIHR), the National MS Society, the MS Society of Canada, the MS Scientific Research Foundation, Research Manitoba, the Consortium of MS Centers, Crohn’s and Colitis Canada, and the Waugh Family Chair in Multiple Sclerosis. A Salter, D Ellenberger, F Fneish, WJ Rogers, and R Middleton report no disclosures.
Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: NARCOMS (North American Research Committee on MS) is a project of the Consortium of MS Centers (CMSC) and is supported by the CMSCs and the Foundation of the CMSC. GMSR is a project of the German MS Society. It is supported by the German MS Society?s Trust and the MS Society itself. The United Kingdom MS (UK-MS) Register is funded by the MS Society and operated and managed by Swansea University Medical School.
Publisher Copyright:
© The Author(s), 2020.
PY - 2021/2
Y1 - 2021/2
N2 - Objective: To assess the feasibility of collaboration and retrospective data harmonization among three multiple sclerosis (MS) registries by investigating employment status. Methods: 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. Results: 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. Conclusion: 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.
AB - Objective: To assess the feasibility of collaboration and retrospective data harmonization among three multiple sclerosis (MS) registries by investigating employment status. Methods: 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. Results: 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. Conclusion: 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.
KW - Multiple sclerosis
KW - harmonization
KW - registry
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U2 - 10.1177/1352458520910499
DO - 10.1177/1352458520910499
M3 - Article
C2 - 32163003
AN - SCOPUS:85081983400
SN - 1352-4585
VL - 27
SP - 281
EP - 289
JO - Multiple Sclerosis Journal
JF - Multiple Sclerosis Journal
IS - 2
ER -