Perspectives of People With Multiple Sclerosis Regarding Data Linkage and Sharing.

IF 7.7 1区医学 Q1 CLINICAL NEUROLOGY

Neurology Pub Date : 2025-05-13 Epub Date: 2025-04-08 DOI:10.1212/WNL.0000000000213587

Ruth Ann Marrie, Mudita Sharma, Gary R Cutter, Robert J Fox, Amber Salter

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引用次数: 0

Abstract

Objectives: Linkage of clinical trial data to other data such as administrative data could enhance understanding of long-term outcomes. We investigated attitudes of people with multiple sclerosis (MS) regarding external linkage of clinical trial data.

Methods: In a cross-sectional survey, North American Research Committee on Multiple Sclerosis registry participants reported willingness to share identifiers to support linkage of their clinical trial data to administrative health databases and preferences for long-term trial follow-up. Polytomous regression tested factors associated with agreeing to administrative data linkage.

Results: Of 6,998 potential participants, 4,980 (71.2%) responded. Of 4,662 respondents meeting eligibility criteria, 3,524 participants (75.6%) indicated that they would agree or might agree to allow administrative data access. Participants were most willing to share their initials (43.7% definitely, 26.8% perhaps). Higher education (odds ratio [OR] 1.51; 1.19-1.93) and income (≥$100,000 vs <$50,000 OR 1.74; 1.17-2.59), alcohol consumption (OR range 1.77-2.27), and previous trial participation (yes/no, OR 1.89; 1.44-2.49) were associated with willingness to allow data access while Black race was associated with unwillingness (0.41; 0.20-0.82).

Discussion: A substantial proportion of people with MS would potentially agree to data sharing and linkage to support clinical trials. Future studies should establish generalizability of these findings.

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来源期刊

Neurology 医学-临床神经学

CiteScore

12.20

自引率

4.00%

发文量

1973

审稿时长

2-3 weeks

期刊介绍： Neurology, the official journal of the American Academy of Neurology, aspires to be the premier peer-reviewed journal for clinical neurology research. Its mission is to publish exceptional peer-reviewed original research articles, editorials, and reviews to improve patient care, education, clinical research, and professionalism in neurology. As the leading clinical neurology journal worldwide, Neurology targets physicians specializing in nervous system diseases and conditions. It aims to advance the field by presenting new basic and clinical research that influences neurological practice. The journal is a leading source of cutting-edge, peer-reviewed information for the neurology community worldwide. Editorial content includes Research, Clinical/Scientific Notes, Views, Historical Neurology, NeuroImages, Humanities, Letters, and position papers from the American Academy of Neurology. The online version is considered the definitive version, encompassing all available content. Neurology is indexed in prestigious databases such as MEDLINE/PubMed, Embase, Scopus, Biological Abstracts®, PsycINFO®, Current Contents®, Web of Science®, CrossRef, and Google Scholar.