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

Abstract

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. 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. 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). 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.