The following story appeared in our Spring/Summer 2021 edition of The Fox Focus on Parkinson’s newsletter. For this story and more, download the full edition.
Most Parkinson’s research to date has not fully represented all people who live with PD. To ensure that the breakthrough treatments we seek benefit the widest range of people affected by Parkinson’s, clinical trials must include the widest possible range of participants. This means it is critical to understand and dismantle historical and cultural barriers that prevent some communities — especially communities of color — from volunteering for Parkinson’s studies. MJFF is funding multiple initiatives with doctors, scientists and patients to make research more welcoming to all.
Changing the Research Landscape
Though Parkinson’s drug development has made tremendous progress in a relatively short time, it hasn’t resulted in gains for all patients equitably. This year, MJFF launched Promoting Diversity, Equity and Inclusion in Parkinson’s Disease Research (DEI-PD), a program specifically seeking investigator-initiated research that focuses on how Parkinson’s disease affects patients and families of diverse racial, ethnic, socioeconomic, gender and geographic backgrounds. DEI-PD will support research applicants engaging Black, Latino, Asian, Indigenous groups, and LGBTQ+ communities, as well as individuals from underprivileged socioeconomic circumstances.
Initiatives that increase broad research participation provide a more holistic view of the causes of disease and lead to new treatments for more people. Selected projects are expected to be funded in late 2021.
Reaching Diverse Populations
Since 2018, the Foundation has partnered with the Community Access, Recruitment and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School on FIRE-UP PD (Fostering Inclusivity in Research Engagement for Underrepresented Populations in Disease). This study has initiated programs to build trust and increase awareness of research participation among traditionally underserved communities.
To date, FIRE-UP PD has supported innovative outreach programs in Boston, Chicago, Denver and southern Florida. Applying community-based methods and working closely with trusted local leaders and organizations, FIRE-UP PD study sites have developed culturally competent materials that educate and engage diverse individuals around Parkinson’s research.
Initial FIRE-UP PD results have identified language, time and the digital divide (no access to internet or email) as factors deterring underrepresented groups from getting involved. A second phase of FIRE-UP PD will further test and validate these initial findings.
“The way we do Parkinson’s research right now is designed for one type of person,” says Jonathan Jackson, PhD, the founding director of CARE Center and the program’s principal investigator. “Multiple barriers intersect and overlap to make it hard to attract, recruit and retain underrepresented individuals to research. Moving forward, we need to be much more thoughtful about the time commitment required, trial design, and what we are asking participants to do.”
Another MJFF-funded study at the University of California, San Diego, suggests that educating physicians to share research options and encourage involvement among Latino people with Parkinson’s can help increase clinical trial participation in this population. The researchers found that a simple lack of awareness about PD research opportunities prevented participation. Other ways to increase recruitment included communicating in a person’s native language and bringing family members into the discussion. MJFF will launch a program to train research staff at movement disorders centers on inclusive practices beginning in late 2021.
Such programs are part of our commitment to reducing health disparities and advancing treatments for everyone with PD. In the interest of promoting diversity, equity and inclusion, the Foundation is seeking stories of the Parkinson’s journey from our diverse community. If you would like to share your story, please email email@example.com.