The Fox Focus 2021 Spring/Summer | Page 10

8 The Power of Inclusion

Building Trust and Awareness to Make Research Welcoming to All

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 investigatorinitiated research to broaden understanding of 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