MJFF Details Need for Diversity in Parkinson’s Research, Care
Current understanding of Parkinson’s disease does not reflect patients from diverse socioeconomic or ethnic backgrounds, and they remain poorly represented in research, according to a position paper from The Michael J. Fox Foundation for Parkinson’s Research (MJFF).
“The current picture of PD [Parkinson’s disease] has been assembled from a relatively homogenous population, and data remain sparse or are non-existent on many traditionally underrepresented groups: Black, Latino, Asian, Indigenous groups, LGBTQ+, and individuals of lower socioeconomic status,” the two investigators, both research program directors at MJFF, wrote.
“Without these data, it is impossible to fully comprehend the breadth and depth of PD across the entire population.”
The paper, “A Call to Action: Promoting Diversity, Equity, and Inclusion in Parkinson’s Research and Care,” was published in the Journal of Parkinson’s Disease.
Parkinson’s affects over six million people worldwide, including almost one million in the U.S. Because disease knowledge has come from relatively homogenous populations of patients, evidence is lacking on its incidence, morbidity, or mortality across a variety of socioeconomic or ethnic groups.
Poor representation in research leads to an incomplete picture of Parkinson’s. Evidence suggests that, across different ethnic groups, disease symptoms present differently. Genetic variation and other factors specific to these patients also impact therapy effectiveness and how medications are metabolized.
“In the minority of PD clinical trials reporting race and ethnicity data, only 8% of participants were non-white,” the investigators wrote.
To reduce health inequities and advance treatments for all Parkinson’s patients, the MJFF described four areas of action: identifying barriers and delivering solutions to research participation, funding research that includes greater diversity, building a workforce of doctors and researchers committed to equity, and supporting a more holistic understanding of Parkinson’s.
“While MJFF efforts in these areas are currently not sufficient to fully reduce health disparities in PD, our hope is that they will serve as solid starting points from which to learn and iterate expanded efforts,” the MJFF team wrote.
To lessen barriers to clinical trial enrollment, the MJFF funded the Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson’s Disease (FIRE-UP PD) study, led by Jonathan Jackson, PhD, at the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital.
FIRE-UP PD found the most common barriers to participation by underrepresented groups were language, time, and a lack of internet access or email. In contrast, greater participation occurred as a result of community engagement, as well as consistent research opportunities at sites where clinical care and research were integrated.
“The findings suggest that underrepresented populations are not asked or consistently engaged regarding PD research participation,” the team wrote.
A second phase of FIRE-UP PD will further test and validate these findings, and MJFF will initiate a program later this year to train research staff at movement disorders clinics on inclusive research practices. The training will include engagement, recruitment, and strategies to retain participants, and to engage minority groups with staff and community organizations that are more representative.
For more direct action, the MJFF’s Therapeutic Pipeline Program will fund clinical trials with a greater diversity of participants. Applications must illustrate how they will recruit a more diverse study group, and provide scientific justification if the study fails to do so.
To support a workforce committed to healthcare equity, MJFF established fellowships to train the next generation of specialists. The Fellowship for Advancing Diversity, Equity, and Inclusion in Parkinson’s Research supports a starting scientist in conducting research that serves underrepresented patients, and in evaluating the role of social determinants in research participation.
Since 2014, the Edmond J. Safra Fellowship in Movement Disorders has supported the training of 27 new movement disorder clinician-researchers. Medical centers seeking this funding are required to provide education on inclusivity and equitable access in their research and clinical care.
MJFF is also a “collaborative member” of the National Academies of Sciences’ working group on Neuroscience Training, which is committed to expanding diversity and inclusion within the neurosciences.
To build a more holistic understanding, research needs to increase knowledge of Parkinson’s in underrepresented groups, including genetic analysis beyond Caucasian populations in Europe or of European descent.
The Aligning Science Across Parkinson’s (ASAP) program is designed to address gaps in basic disease mechanisms, development, and progression via the Global Parkinson’s Genetic Program (GP2), led by Andrew Singleton, PhD, at the National Institute of Aging. GP2 is a five-year program that will conduct genetic analysis on more than 150,000 volunteers worldwide to further the understanding of Parkinson’s genetics.
Finally, the MJFF launched a funding opportunity in February called Promoting Diversity, Equity, and Inclusion in Parkinson’s Research. Research proposals must include underrepresented populations, and have a focus that includes disease incidence and underlying causes, outcomes, diagnostic challenges, or disease burden. Researchers from minority groups were encouraged to apply.
Applications, submitted in April, included 98 proposals from 25 countries on six continents. Funding decisions will be made in November, the MJFF said.
“Our understanding of the etiology, clinical presentation, and treatment of PD is growing, but remains far from complete. If preclinical and clinical PD research continues in its failure to represent all who have the disease, we will never develop a comprehensive understanding of the biological underpinnings of the disease, nor be ensured treatments will work for all” patients, the investigators wrote.
“While factors driving these disparities, including broader societal challenges, are complex, it is imperative that the PD research, care, and patient communities move in a decisive and coordinated fashion to identify and implement strategies that can support the process of creating health equity” in Parkinson’s disease, they concluded.