Objective: To describe the goals and Year 1 initiatives of PPMI Diversity, Equity, and Inclusion (DEI) taskforce

Background: Clinical trials under-enroll people with Parkinson’s disease (PD) who identify as members of minority communities. Groups underrepresented in PD research are at risk for worsened clinical outcomes. To help address this gap, PPMI launched a DEI task force in 2021. The goals of the task force were to (1) support sites in enrolling a more diverse cohort, (2) provide tactics to reach underrepresented populations in each site’s catchment area, (3) elevate the importance of diversity and inclusion for the study, (4) identify sites with DEI interest to conduct engagement pilots and, ultimately, (5) increase % of underrepresented group participants from 3-5% to 10% over 5 years (i.e. 1-2% per year).

Method: Year 1 focused on educating sites on inclusive research practices to support enrollment of underrepresented participants, developing sustainable partnerships with key stakeholders and community-based organizations, adding new clinical sites, making relevant protocol and personnel changes, translating study materials, and funding pilot projects to help further optimize research engagement for underrepresented groups.

Results: Coordinators from all active PPMI clinical sites were given the opportunity to participate in a training workshop on best practices to support diversity, equity and inclusion in PD research. A new PPMI clinical site was added in Lagos, Nigeria. The collection of sexual orientation and gender identity (SOGI) data was added to the study protocol. Active outreach and relationship building with community-based partners focused on racial/ethnic minority and LGBTQ+ individuals commenced. Educational webinar series and new, more inclusive study recruitment materials were developed. Bilingual staff were hired. Two research pilot studies exploring barriers and facilitators to research participation in the Black and Hispanic communities and innovative strategies for community-based outreach were completed.

Conclusion: Increased attention to DEI in all aspects of study design and implementation is required to address health care disparities in PD research and clinical care. Lessons learned in PPMI may inform best practices for future clinical trial design and implementation.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/parkinsons-progression-markers-initiative-ppmi-prioritizes-enrollment-of-individuals-from-diverse-and-underrepresented-populations/