{"title":"在代表性不足的群体中参与帕金森病研究的障碍和促进因素。","authors":"Jennifer Adrissi, Anabel Marre, Maxwell Edwin Shramuk, Emily Zivin, Karen Williams, Danielle Larson","doi":"10.1186/s13104-025-07293-1","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>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.</p><p><strong>Results: </strong>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.</p>","PeriodicalId":9234,"journal":{"name":"BMC Research Notes","volume":"18 1","pages":"240"},"PeriodicalIF":1.6000,"publicationDate":"2025-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12121102/pdf/","citationCount":"0","resultStr":"{\"title\":\"Barriers and facilitators to Parkinson's disease research participation amongst underrepresented groups.\",\"authors\":\"Jennifer Adrissi, Anabel Marre, Maxwell Edwin Shramuk, Emily Zivin, Karen Williams, Danielle Larson\",\"doi\":\"10.1186/s13104-025-07293-1\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>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.</p><p><strong>Results: </strong>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.</p>\",\"PeriodicalId\":9234,\"journal\":{\"name\":\"BMC Research Notes\",\"volume\":\"18 1\",\"pages\":\"240\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2025-05-29\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12121102/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"BMC Research Notes\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1186/s13104-025-07293-1\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"MULTIDISCIPLINARY SCIENCES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMC Research Notes","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1186/s13104-025-07293-1","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"MULTIDISCIPLINARY SCIENCES","Score":null,"Total":0}
Barriers and facilitators to Parkinson's disease research participation amongst underrepresented groups.
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.
BMC Research NotesBiochemistry, Genetics and Molecular Biology-Biochemistry, Genetics and Molecular Biology (all)
CiteScore
3.60
自引率
0.00%
发文量
363
审稿时长
15 weeks
期刊介绍:
BMC Research Notes publishes scientifically valid research outputs that cannot be considered as full research or methodology articles. We support the research community across all scientific and clinical disciplines by providing an open access forum for sharing data and useful information; this includes, but is not limited to, updates to previous work, additions to established methods, short publications, null results, research proposals and data management plans.