帕金森病研究中代表性不足群体参与的障碍与促进因素。
Barriers and facilitators to Parkinson's disease research participation amongst underrepresented groups.
作者信息
Adrissi Jennifer, Marre Anabel, Shramuk Maxwell Edwin, Zivin Emily, Williams Karen, Larson Danielle
机构信息
Department of Neurology, University of California Los Angeles, 1100 Glendon Avenue 11th Floor, Los Angeles, CA, 90024, USA.
Northwestern University, 633 Clark Street, Evanston, IL, 60208, USA.
出版信息
BMC Res Notes. 2025 May 29;18(1):240. doi: 10.1186/s13104-025-07293-1.
OBJECTIVE
Even though the growing prevalence of Parkinson's disease (PD) is inclusive of ethnic and racial minority groups, these populations remain underrepresented in PD clinical research. This community-based study seeks to add to the limited knowledge on barriers and facilitators to underrepresented group (URG) enrollment in PD trials by assessing minority community members' PD and research knowledge, trust in medical researchers, and likelihood to participate in research based on various study design factors.
RESULTS
Of the 97 total workshop participants, 80 completed demographic information, with the majority female (71%) and from minority racial groups -- African American/Black (37.5%) and East/Southeast Asian (45%). Levels of trust in medical researchers were generally high and improved post-workshop. Most respondents were likely to participate in trials requiring DNA or cognitive testing, and unlikely if requiring intravenous infusion or lumbar puncture. Facilitators to trial participation included offering transportation and financial incentives, while longer study visits and study duration were barriers.
目的
尽管帕金森病（PD）的患病率不断上升，涵盖了少数族裔群体，但这些人群在PD临床研究中的代表性仍然不足。这项基于社区的研究旨在通过评估少数族裔社区成员的PD和研究知识、对医学研究人员的信任以及基于各种研究设计因素参与研究的可能性，来增加关于少数群体（URG）参与PD试验的障碍和促进因素的有限知识。
结果
在总共97名研讨会参与者中，80人完成了人口统计学信息，大多数为女性（71%），来自少数种族群体——非裔美国人/黑人（37.5%）和东亚/东南亚人（45%）。对医学研究人员的信任水平总体较高，且在研讨会后有所提高。大多数受访者可能会参与需要DNA或认知测试的试验，如果需要静脉输液或腰椎穿刺则不太可能参与。试验参与的促进因素包括提供交通和经济激励措施，而较长的研究访视和研究持续时间则是障碍。
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