Juliana M. Ison , Jonathan D. Jackson , Helen Hemley , Allison Willis , Bernadette Siddiqi , Eric A. Macklin , Christine Ulysse , Michael S. Fitts , Tiffany T.-H. Pham , Mitra Afshari , Pinky Agarwal , Michael Aminoff , Stephanie Bissonnette , Michelle Fullard , Tarannum S. Khan , Danielle N. Larson , Catherine Wielinski , Angie V. Sanchez
{"title":"促进帕金森病代表性不足人群参与研究的包容性:FIRE-UP PD 研究。","authors":"Juliana M. Ison , Jonathan D. Jackson , Helen Hemley , Allison Willis , Bernadette Siddiqi , Eric A. Macklin , Christine Ulysse , Michael S. Fitts , Tiffany T.-H. Pham , Mitra Afshari , Pinky Agarwal , Michael Aminoff , Stephanie Bissonnette , Michelle Fullard , Tarannum S. Khan , Danielle N. Larson , Catherine Wielinski , Angie V. Sanchez","doi":"10.1016/j.cct.2024.107619","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><p>Members of vulnerable populations are underrepresented in Parkinson's disease (PD) research. A complex web of research barriers perpetuates this gap. Community-based research methods are one approach to addressing this issue. The present PD study was designed to examine the effectiveness of community-based interventions to overcome barriers and increase research participation among underrepresented groups (URGs).</p></div><div><h3>Methods</h3><p>Eight study sites across the US were selected and paired based on proposed interventions with specific URGs. Surveys assessed knowledge and attitudes toward PD research. Finally, researchers examined whether the present study affected recruitment to Fox Insight, an online PD research study also recruiting at each site.</p></div><div><h3>Results</h3><p>In total, 474 participants were recruited. At post-intervention for the FIRE-UP PD Study, recruitment increased significantly in intervention compared to control sites among Black and African American non-Hispanic/Latino populations (<em>p</em> = 0.003), White Hispanic/Latino (<em>p</em> = 0.003) populations, and Not Listed Hispanic/Latino populations (<em>p</em> < 0.001) as well as those with an educational attainment of a high school diploma/General Education Diploma (GED) (<em>p</em> = 0.009), and an income <$20,000 (<em>p</em> = 0.005) or between $20,000–$34,999 (<em>p</em> < 0.001). Study surveys measuring changes in awareness and attitudes toward PD research had mixed results. In Fox Insight, 181 participants were passively recruited with a shift toward more diverse participant demographics.</p></div><div><h3>Conclusion</h3><p>Research participation demographics reflective of the general population are critical to PD investigation and treatment. The FIRE-UP PD Study showed the effectiveness of localized community engagement strategies in increasing URG recruitment to PD research. Therefore, further PD research employing community-based methods to improve diverse participant recruitment is needed.</p></div>","PeriodicalId":10636,"journal":{"name":"Contemporary clinical trials","volume":null,"pages":null},"PeriodicalIF":2.0000,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease: The FIRE-UP PD study\",\"authors\":\"Juliana M. Ison , Jonathan D. Jackson , Helen Hemley , Allison Willis , Bernadette Siddiqi , Eric A. Macklin , Christine Ulysse , Michael S. Fitts , Tiffany T.-H. Pham , Mitra Afshari , Pinky Agarwal , Michael Aminoff , Stephanie Bissonnette , Michelle Fullard , Tarannum S. Khan , Danielle N. Larson , Catherine Wielinski , Angie V. Sanchez\",\"doi\":\"10.1016/j.cct.2024.107619\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><p>Members of vulnerable populations are underrepresented in Parkinson's disease (PD) research. A complex web of research barriers perpetuates this gap. Community-based research methods are one approach to addressing this issue. The present PD study was designed to examine the effectiveness of community-based interventions to overcome barriers and increase research participation among underrepresented groups (URGs).</p></div><div><h3>Methods</h3><p>Eight study sites across the US were selected and paired based on proposed interventions with specific URGs. Surveys assessed knowledge and attitudes toward PD research. Finally, researchers examined whether the present study affected recruitment to Fox Insight, an online PD research study also recruiting at each site.</p></div><div><h3>Results</h3><p>In total, 474 participants were recruited. At post-intervention for the FIRE-UP PD Study, recruitment increased significantly in intervention compared to control sites among Black and African American non-Hispanic/Latino populations (<em>p</em> = 0.003), White Hispanic/Latino (<em>p</em> = 0.003) populations, and Not Listed Hispanic/Latino populations (<em>p</em> < 0.001) as well as those with an educational attainment of a high school diploma/General Education Diploma (GED) (<em>p</em> = 0.009), and an income <$20,000 (<em>p</em> = 0.005) or between $20,000–$34,999 (<em>p</em> < 0.001). Study surveys measuring changes in awareness and attitudes toward PD research had mixed results. In Fox Insight, 181 participants were passively recruited with a shift toward more diverse participant demographics.</p></div><div><h3>Conclusion</h3><p>Research participation demographics reflective of the general population are critical to PD investigation and treatment. The FIRE-UP PD Study showed the effectiveness of localized community engagement strategies in increasing URG recruitment to PD research. Therefore, further PD research employing community-based methods to improve diverse participant recruitment is needed.</p></div>\",\"PeriodicalId\":10636,\"journal\":{\"name\":\"Contemporary clinical trials\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2024-07-05\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Contemporary clinical trials\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S1551714424002027\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"MEDICINE, RESEARCH & EXPERIMENTAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Contemporary clinical trials","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1551714424002027","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"MEDICINE, RESEARCH & EXPERIMENTAL","Score":null,"Total":0}
Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease: The FIRE-UP PD study
Background
Members of vulnerable populations are underrepresented in Parkinson's disease (PD) research. A complex web of research barriers perpetuates this gap. Community-based research methods are one approach to addressing this issue. The present PD study was designed to examine the effectiveness of community-based interventions to overcome barriers and increase research participation among underrepresented groups (URGs).
Methods
Eight study sites across the US were selected and paired based on proposed interventions with specific URGs. Surveys assessed knowledge and attitudes toward PD research. Finally, researchers examined whether the present study affected recruitment to Fox Insight, an online PD research study also recruiting at each site.
Results
In total, 474 participants were recruited. At post-intervention for the FIRE-UP PD Study, recruitment increased significantly in intervention compared to control sites among Black and African American non-Hispanic/Latino populations (p = 0.003), White Hispanic/Latino (p = 0.003) populations, and Not Listed Hispanic/Latino populations (p < 0.001) as well as those with an educational attainment of a high school diploma/General Education Diploma (GED) (p = 0.009), and an income <$20,000 (p = 0.005) or between $20,000–$34,999 (p < 0.001). Study surveys measuring changes in awareness and attitudes toward PD research had mixed results. In Fox Insight, 181 participants were passively recruited with a shift toward more diverse participant demographics.
Conclusion
Research participation demographics reflective of the general population are critical to PD investigation and treatment. The FIRE-UP PD Study showed the effectiveness of localized community engagement strategies in increasing URG recruitment to PD research. Therefore, further PD research employing community-based methods to improve diverse participant recruitment is needed.
期刊介绍:
Contemporary Clinical Trials is an international peer reviewed journal that publishes manuscripts pertaining to all aspects of clinical trials, including, but not limited to, design, conduct, analysis, regulation and ethics. Manuscripts submitted should appeal to a readership drawn from disciplines including medicine, biostatistics, epidemiology, computer science, management science, behavioural science, pharmaceutical science, and bioethics. Full-length papers and short communications not exceeding 1,500 words, as well as systemic reviews of clinical trials and methodologies will be published. Perspectives/commentaries on current issues and the impact of clinical trials on the practice of medicine and health policy are also welcome.