Fox Focus I Spring / Summer 2021 9 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 .”
PHOTO COURTESY OF THE NATIONAL INSTITUTES OF HEALTH
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
Educating Doctors
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 of 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
shareyourstory @ michaeljfox . org .
Check out our recent webinar and other Spanish resources at michaeljfox . org / recursos-es . And , stay tuned for a Spanish version of Parkinson ’ s 360 — our guide for patients and families living with Parkinson ’ s — due out this summer .