Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups
Abstract 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 und...
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| Format: | Article |
| Language: | English |
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BMC
2025-05-01
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| Series: | BMC Research Notes |
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| Online Access: | https://doi.org/10.1186/s13104-025-07293-1 |
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| author | Jennifer Adrissi Anabel Marre Maxwell Edwin Shramuk Emily Zivin Karen Williams Danielle Larson |
| author_facet | Jennifer Adrissi Anabel Marre Maxwell Edwin Shramuk Emily Zivin Karen Williams Danielle Larson |
| author_sort | Jennifer Adrissi |
| collection | DOAJ |
| description | Abstract 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. |
| format | Article |
| id | doaj-art-92d6a68d911d4db5a091c8f37d4f2dd1 |
| institution | DOAJ |
| issn | 1756-0500 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Research Notes |
| spelling | doaj-art-92d6a68d911d4db5a091c8f37d4f2dd12025-08-20T03:22:08ZengBMCBMC Research Notes1756-05002025-05-011811710.1186/s13104-025-07293-1Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groupsJennifer Adrissi0Anabel Marre1Maxwell Edwin Shramuk2Emily Zivin3Karen Williams4Danielle Larson5Department of Neurology, University of California Los AngelesNorthwestern UniversityDepartment of Preventive Medicine, Northwestern University Feinberg School of MedicineDepartment of Neurology, Northwestern University Feinberg School of MedicineDepartment of Neurology, Northwestern University Feinberg School of MedicineDepartment of Neurology, Northwestern University Feinberg School of MedicineAbstract 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.https://doi.org/10.1186/s13104-025-07293-1Underrepresented groupsParkinson’s diseaseClinical researchCommunity-academic partnership |
| spellingShingle | Jennifer Adrissi Anabel Marre Maxwell Edwin Shramuk Emily Zivin Karen Williams Danielle Larson Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups BMC Research Notes Underrepresented groups Parkinson’s disease Clinical research Community-academic partnership |
| title | Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups |
| title_full | Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups |
| title_fullStr | Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups |
| title_full_unstemmed | Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups |
| title_short | Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups |
| title_sort | barriers and facilitators to parkinson s disease research participation amongst underrepresented groups |
| topic | Underrepresented groups Parkinson’s disease Clinical research Community-academic partnership |
| url | https://doi.org/10.1186/s13104-025-07293-1 |
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