Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson’s Disease (FIRE-UP PD) is an MJFF-funded study that will establish and assess outreach programs in Boston, Massachusetts, Weston, Florida, Denver, Colorado, and Chicago, Illinois. Massachusetts General’s Community Access, Recruitment and Engagement (CARE) Research Center is coordinating the effort.
“Parkinson’s research has made significant strides toward better diagnostics and new treatments in past decades, but most research has included only a subset of patients with a common European ancestry,” said Sohini Chowdhury, MJFF deputy CEO, in a press release.
“Imagine where we would be with a more holistic view of the disease. This program aims to broaden the vital partnership between researchers and the people living with Parkinson’s, each and every one,” Chowdhury said.
Jonathan Jackson, the CARE Research Center’s founding director and FIRE-UP PD principal investigator, said that because PD is such a varied disease and affects each person differently, both in terms of symptoms and disease progression, research inclusivity is key.
“When we include people from all backgrounds in Parkinson’s research, we better understand the disease itself, improving our chances at finding treatments that work for everyone. FIRE-UP PD is unique in its attention to diversity in Parkinson’s research and its application of community-based methods across all geographic regions,” he said.
Four academic centers will develop community-centered interventions to produce culturally sensitive messaging and resources that educate and engage around Parkinson’s research. The sites and programs include:
Boston Medical Center: Researchers will partner with community health centers to engage Boston’s Haitian and African American communities by using educational tools emphasizing the importance of Parkinson’s research and diagnosis.
Cleveland Clinic in Weston, Florida: The focus at this site is southern Florida’s Hispanic communities, and engagement through educational seminars and collaboration with area support groups.
University of Colorado: Through a method called Boot Camp Translation, which recruits healthcare professionals and community members to translate medical information for local populations, investigators will address health literacy in Hispanic and lower-income populations.
Northwestern University, Chicago: A stakeholder partnership of patients, community leaders, caregivers and physicians will conduct focus groups and create community-specific educational toolkits for Hispanic, African American and lower-income residents.
In addition to enhancing disease awareness and fostering trust in Parkinson’s research participation, the programs hope to promote enrollment in MJFF’s Fox Insight, an online clinical study aimed at building a large, diverse group of Parkinson’s patients and age-matched control volunteers to gain insight into the disease’s experience, genetics and variability.
To that end, sites in Minneapolis, Minnesota, San Francisco, California, Chicago and Kirkland, Washington will offer Fox Insight materials exclusively in their clinics in order to compare conventional outreach methods with those of the intervention sites.