{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T16:29:14Z","timestamp":1787502554687,"version":"build-2736575974"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,5,29]],"date-time":"2025-05-29T00:00:00Z","timestamp":1748476800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,5,29]],"date-time":"2025-05-29T00:00:00Z","timestamp":1748476800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Parkinson\u2019s Foundation Centers of Excellence CORE Grant","award":["SP0060799"],"award-info":[{"award-number":["SP0060799"]}]},{"name":"Parkinson\u2019s Foundation Centers of Excellence CORE Grant","award":["SP0060799"],"award-info":[{"award-number":["SP0060799"]}]},{"name":"Parkinson\u2019s Foundation Centers of Excellence CORE Grant","award":["SP0060799"],"award-info":[{"award-number":["SP0060799"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Res Notes"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Even though the growing prevalence of Parkinson\u2019s 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\u2019 PD and research knowledge, trust in medical researchers, and likelihood to participate in research based on various study design factors.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13104-025-07293-1","type":"journal-article","created":{"date-parts":[[2025,5,29]],"date-time":"2025-05-29T01:34:00Z","timestamp":1748482440000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Barriers and facilitators to Parkinson\u2019s disease research participation amongst underrepresented groups"],"prefix":"10.1186","volume":"18","author":[{"given":"Jennifer","family":"Adrissi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anabel","family":"Marre","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maxwell Edwin","family":"Shramuk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily","family":"Zivin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle","family":"Larson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,5,29]]},"reference":[{"key":"7293_CR1","doi-asserted-by":"publisher","first-page":"170","DOI":"10.1038\/s41531-022-00410-y","volume":"8","author":"AW Willis","year":"2022","unstructured":"Willis AW, Roberts E, Beck JC, Fiske B, Ross W, Savica R, Van Den Eeden SK, et al. Incidence of Parkinson\u2019s disease in North America. NPJ Parkinson\u2019s Dis. 2022;8:170. https:\/\/doi.org\/10.1038\/s41531-022-00410-y.","journal-title":"NPJ Parkinson\u2019s Dis"},{"key":"7293_CR2","doi-asserted-by":"publisher","first-page":"1015","DOI":"10.1093\/aje\/kwg068","volume":"157","author":"SK Van Den Eeden","year":"2003","unstructured":"Van Den Eeden SK, Tanner CM, Bernstein AL, Fross RD, Leimpeter A, Bloch DA, et al. Incidence of Parkinson\u2019s disease: variation by age, gender, and race\/ethnicity. Am J Epidemiol. 2003;157:1015\u201322. [PubMed: 12777365].","journal-title":"Am J Epidemiol"},{"key":"7293_CR3","doi-asserted-by":"publisher","first-page":"354","DOI":"10.1212\/WNL.0b013e3182088260","volume":"76","author":"JF Burke","year":"2011","unstructured":"Burke JF, Brown DL, Lisabeth LD, Sanchez BN, Morgenstern LB. Enrollment of women and minorities in NINDS trials. Neurology. 2011;76:354\u201360.","journal-title":"Neurology"},{"key":"7293_CR4","doi-asserted-by":"publisher","unstructured":"Di Luca D, Macklin EA, Hodgeman K, Lopez G, Pothier L, Callahan K, Chan J et al. Enrollment of participants from marginalized racial and ethnic groups. Neurology: Clinical Practice. 2023;13. https:\/\/doi.org\/10.1212\/CPJ.0000000000200113","DOI":"10.1212\/CPJ.0000000000200113"},{"key":"7293_CR5","doi-asserted-by":"publisher","first-page":"258","DOI":"10.1016\/j.parkreldis.2008.06.005","volume":"15","author":"MG Schneider","year":"2009","unstructured":"Schneider MG, Swearingen CJ, Shulman LM, Ye J, Baumgarten M, Tilley BC. Minority enrollment in Parkinson\u2019s disease clinical trials. Parkinsonism Relat Disord. 2009;15:258\u201362. https:\/\/doi.org\/10.1016\/j.parkreldis.2008.06.005.","journal-title":"Parkinsonism Relat Disord"},{"key":"7293_CR6","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1007\/s11910-022-01212-8","volume":"8","author":"J Adrissi","year":"2022","unstructured":"Adrissi J, Fleisher J. Moving the dial toward equity in Parkinson\u2019s disease clinical research: A review of current literature and future directions in diversifying PD clinical trial participation. Curr Neurol Neurosci Rep. 2022;8:475\u201383. https:\/\/doi.org\/10.1007\/s11910-022-01212-8.","journal-title":"Curr Neurol Neurosci Rep"},{"key":"7293_CR7","doi-asserted-by":"publisher","first-page":"1200","DOI":"10.1002\/mds.22557","volume":"24","author":"N Dahodwala","year":"2009","unstructured":"Dahodwala N, Siderowf A, Xie M, Noll E, Stern MB, Mandell DS. Racial differences in the diagnosis of Parkinson\u2019s disease. Mov Disord. 2009;24:1200\u20135.","journal-title":"Mov Disord"},{"key":"7293_CR8","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1159\/000324935","volume":"36","author":"N Dahodwala","year":"2011","unstructured":"Dahodwala N, Karlawish J, Siderowf A, Duda JE, Mandell DS. Delayed Parkinson\u2019s disease diagnosis among African\u2013Americans: the role of reporting of disability. Neuroepidemiology. 2011;36:150\u20134.","journal-title":"Neuroepidemiology"},{"key":"7293_CR9","doi-asserted-by":"publisher","first-page":"851","DOI":"10.1212\/WNL.0b013e31822c9123","volume":"77","author":"AW Willis","year":"2011","unstructured":"Willis AW, Schootman M, Evanoff BA, Perlmutter JS, Racette BA. Neurologist care in Parkinson disease: a utilization, outcomes, and survival study. Neurology. 2011;77:851\u20137.","journal-title":"Neurology"},{"key":"7293_CR10","unstructured":"Dahodwala N, Siderowf A, Karlawish J. What patient factors associate with inaccuracies in reporting of parkinsonian signs? Ann Neurol. 2012;72."},{"key":"7293_CR11","doi-asserted-by":"publisher","first-page":"809","DOI":"10.3233\/JAD-210231","volume":"81","author":"L Damron","year":"2021","unstructured":"Damron L, Litvan I, Bayram E, Berk S, Siddiqi B, Shill H. Hispanic perspectives on Parkinson\u2019s disease care and research participation. J Alzheimer\u2019s Dis. 2021;81:809\u201319. https:\/\/doi.org\/10.3233\/JAD-210231.","journal-title":"J Alzheimer\u2019s Dis"},{"key":"7293_CR12","doi-asserted-by":"publisher","first-page":"698","DOI":"10.1353\/hpu.2006.0126","volume":"17","author":"RV Katz","year":"2006","unstructured":"Katz RV, Kegeles SS, Kressin NR, Green BL, Min QW, James SA, Russell SL, Claudio C. The Tuskegee legacy project: willingness of minorities to participate in biomedical research. 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JAMA. 2007;297:407\u201310.","journal-title":"JAMA"}],"container-title":["BMC Research Notes"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13104-025-07293-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13104-025-07293-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13104-025-07293-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,29]],"date-time":"2025-05-29T01:34:04Z","timestamp":1748482444000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcresnotes.biomedcentral.com\/articles\/10.1186\/s13104-025-07293-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5,29]]},"references-count":26,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,12]]}},"alternative-id":["7293"],"URL":"https:\/\/doi.org\/10.1186\/s13104-025-07293-1","relation":{},"ISSN":["1756-0500"],"issn-type":[{"value":"1756-0500","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,5,29]]},"assertion":[{"value":"24 January 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 May 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 May 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All participants provided informed consent. For in-person workshops, written informed consent was obtained. For virtual workshops, online\/digital informed consent was obtained from participants via REDCap\u2013 a secure, web-based data capture tool\u2013 hosted at Northwestern University. Workshop attendees were also given the option to participate in the educational workshop without completing the surveys if they preferred to not participate in the research study. This study was performed in accordance with the principles of the 1975 Declaration of Helsinki. The study was approved by the Institutional Review Board of Northwestern University. We confirm that we have read the Journal\u2019s position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Written informed consent for publication was obtained from all participants.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors have no financial disclosures.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Financial disclosures"}},{"value":"The authors declare no competing interests.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"240"}}