NEW YORK and BOSTON, Oct. 9, 2019 /PRNewswire/ -- The Michael J. Fox Foundation for Parkinson's Research (MJFF) and the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital announce an innovative study to make Parkinson's disease research more inclusive of underrepresented populations. The CARE Research Center is coordinating the MJFF-funded study — Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease (FIRE-UP PD) — which will establish and evaluate outreach programs in four cities around the country.
"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 MJFF Deputy CEO Sohini Chowdhury. "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."
Said CARE Research Center's Founding Director and FIRE-UP PD Principal Investigator Jonathan Jackson, PhD, "Parkinson's disease affects a wide range of people, each with different symptoms and progression. 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 geographic regions."
Four academic intervention sites will develop community-focused interventions to develop culturally relevant messaging and materials that educate and engage around Parkinson's research. The FIRE-UP intervention sites and programs are:
- Boston Medical Center: Investigators are collaborating with community health centers to engage Haitian and Black populations in Boston through educational tools focused on the importance of Parkinson's research and of obtaining a Parkinson's diagnosis.
- Cleveland Clinic Florida, Weston: This site is engaging Hispanic communities in southern Florida through educational seminars and partnership with local support groups.
- University of Colorado, Denver: Researchers are addressing health literacy in Hispanic and low-income populations around Denver through a method called Boot Camp Translation, which recruits community members and medical professionals to translate medical information for the local population.
- Northwestern University, Chicago: This program is developing a multi-stakeholder alliance comprised of community leaders, people with Parkinson's, caregivers and local physicians. The partners will conduct focus groups and develop community-specific educational toolkits for Black, Hispanic and low-income populations.
These programs aim to increase awareness and improve attitudes toward engagement and trust in Parkinson's research. They also will encourage enrollment in MJFF's Fox Insight study. Four sites — Rush University in Chicago; Struthers Parkinson's Center in Minneapolis; University of California, San Francisco; and EvergreenHealth in Kirkland, Washington — will only offer Fox Insight flyers and pamphlets in their clinics to compare a standard outreach method with the proactive community efforts of the intervention sites. MJFF launched Fox Insight — an online clinical study — to learn more about life with Parkinson's and accelerate breakthroughs by capturing the experiences of people with and without the disease from varied backgrounds.
The FIRE-UP PD initiative builds on previous MJFF grants to projects engaging diverse populations in research and its longstanding commitment to break down barriers to study participation. The CARE Research Center is a natural partner for this work, having pioneered work to engage and enable communities to co-lead and contribute to research endeavors.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $850 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
About the Massachusetts General Hospital
Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH Research Institute conducts the largest hospital-based research program in the nation, with an annual research budget of more than $925 million and comprises more than 8,500 researchers working across more than 30 institutes, centers and departments. In August 2018, the MGH was once again named to the Honor Roll in the U.S. News & World Report list of "America's Best Hospitals."
SOURCE The Michael J. Fox Foundation for Parkinson’s Research; Massachusetts General Hospital