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.

查看原文本刊更多论文

关于数据链接和共享的多发性硬化症患者的观点。

目的：将临床试验数据与其他数据（如行政管理数据）联系起来，可以增强对长期结果的理解。我们调查了多发性硬化症（MS）患者对临床试验数据的外部联系的态度。方法：在一项横断面调查中，北美多发性硬化症研究委员会登记的参与者报告说，他们愿意共享标识符，以支持他们的临床试验数据与行政卫生数据库的联系，并倾向于长期试验随访。多元回归测试了与同意管理数据链接相关的因素。结果：6,998名潜在参与者中，4,980名（71.2%）回应。在符合资格标准的4,662名受访者中，有3,524名受访者（75.6%）表示他们会同意或可能同意允许行政数据访问。参与者最愿意分享他们的首字母缩写（43.7%肯定，26.8%可能）。高等教育(优势比[OR] 1.51；1.19-1.93)和收入(≥100,000美元vs讨论：相当大比例的MS患者可能同意数据共享和链接以支持临床试验。未来的研究应该建立这些发现的普遍性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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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.