FIRE-UP PD Initiative Seeks to Boost Inclusivity in Parkinson’s Research – Parkinson’s News Today

The Michael J. Fox Foundation (MJFF) and Massachusetts General Hospitalhave announced an initiative to enhance diversity in Parkinsons diseaseresearch.

Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinsons 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 GeneralsCommunity Access, Recruitment and Engagement (CARE) Research Center is coordinating the effort.

Parkinsons 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 Parkinsons, each and every one, Chowdhury said.

Jonathan Jackson, the CARE Research Centers 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 Parkinsons 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 Parkinsons 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 Parkinsons research. The sites and programs include:

Boston Medical Center:Researchers will partner with community health centers to engage Bostons Haitian and African American communities by using educational tools emphasizing the importance of Parkinsons research and diagnosis.

Cleveland Clinic in Weston, Florida:The focus at this site is southern Floridas 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 Parkinsons research participation, the programs hope to promote enrollment in MJFFs Fox Insight, an online clinical study aimed at building a large, diverse group of Parkinsons patients and age-matched control volunteers to gain insight into the diseases 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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours dElegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled Belle of the Concours.

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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.

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FIRE-UP PD Initiative Seeks to Boost Inclusivity in Parkinson's Research - Parkinson's News Today