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Moving the Dial Toward Equity in Parkinson’s Disease Clinical Research: a Review of Current Literature and Future Directions in Diversifying PD Clinical Trial Participation

  • Movement Disorders (T. Simuni, Section Editor)
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Abstract

Purpose of Review

Parkinson’s disease (PD), the second most common neurodegenerative disease, has a worldwide prevalence projected at 12 million by 2040. While PD has been extensively researched, our understanding of the disease is based on research studies that include mostly participants of European descent. The lack of diversity in clinical trial enrollment has limited the generalizability of scientific discoveries in the field. Here, we discuss contributors to racial and ethnic disparities in PD clinical research enrollment, summarize recently proposed and tested interventions, and propose next steps to increase equity and representation in PD research.

Recent Findings

Enrollment in PD clinical research is vulnerable to upstream disparities and inequities from PD awareness to access to specialized PD centers. While additional research is still needed, recent studies have identified some potential strategies for increasing underrepresented minority (URM) recruitment including increasing the availability of linguistically and culturally diverse research materials and team members, partnering with community organizations, and forming relationships with URM-serving community physicians.

Summary

To move the dial toward equity in PD research, it will be necessary to implement known successful strategies and further investigate additional contributors to the underrepresentation of URMs in PD clinical research while developing and testing interventions to address these factors.

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Authors and Affiliations

  1. Department of Neurology, Northwestern University Feinberg School of Medicine, 710 N. Lake Shore Dr, 11th Floor, Chicago, IL, 60611, USA

    Jennifer Adrissi

  2. Department of Neurological Sciences, Rush University Medical Center, Chicago, IL, USA

    Jori Fleisher

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  1. Jennifer Adrissi
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Correspondence to Jennifer Adrissi.

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Conflict of Interest

No funding was received to assist with the preparation of this manuscript. Jennifer Adrissi has no relevant financial or non-financial interests to disclose. Jori Fleisher has received honoraria from the Parkinson’s Foundation and Davis Phinney Foundation for educational or consulting activities and research support from NINDS, NIA/Emory Roybal Center for Caregiving Mastery, Parkinson’s Foundation, CurePSP, Rush University Center for Excellence in Aging, and private philanthropic support from Joyce DeMoose and George Harvey, and Elena Urschel. Jori Fleisher has also received royalties from Wolters Klewer Health/UpToDate.

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Adrissi, J., Fleisher, J. Moving the Dial Toward Equity in Parkinson’s Disease Clinical Research: a Review of Current Literature and Future Directions in Diversifying PD Clinical Trial Participation. Curr Neurol Neurosci Rep 22, 475–483 (2022). https://doi.org/10.1007/s11910-022-01212-8

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