Every Voice Counts: The Road to Equity in Research

For some time now, there has been increasing evidence of the differences that exist in the incidence, prevalence, diagnosis, and treatment of Parkinson’s disease across racial and ethnic minority groups. A new study published by Penn Medicine and The Michael J. Fox Foundation highlights the growing body of research suggesting these differences exist, aims to increase our knowledge of disparities in PD and seeks to identify knowledge gaps and policy changes necessary to ensure equal, high-value care for all people with the disease.

One finding tells of the lack of under-represented racial and ethnic groups in PD research: Of the clinical trials published between 1985 and 2007, only 17 percent reported participation in race/ethnicity. Of the studies that did report this demographic variable, less than 8 percent of participants were non-white. According to the paper, the lack of racial and ethnic diversity in clinical research adversely impacts our understanding of PD outcomes and limits our ability to provide quality, evidence-based care, further exacerbating health disparities.

MJFF supports multiple efforts to expand research cohorts into underrepresented populations, with the goal of improving our grasp on PD across the spectrum of genetic backgrounds and enabling the development of better treatments. Here are just a few of the ways the organization is striving to do this:

• Understanding Parkinson’s Genetics in Black and Africa-American Populations: MJFF is assisting with Black and African American Connections to Parkinson’s Disease (BLAAC PD), a study of the Global Parkinson’s Genetics Program (GPs), to better understand the role genes play in the development and progression of PD. In February, the study expanded to six sites across the Untied States. Data from BLAAC PD will be used to compare genomic data between people of different populations in order to identify overlapping genetic traits related to PD, and develop targeted therapies that will be better suited for Black and African-American populations.

• Supporting Research for Veterans with PD: In a first-of-its-kind collaboration with the U.S. Department of Veterans Affairs (VA), GP2, with the help of MJFF, is building a diverse cohort through the Veterans Parkinson’s Disease Genetics Initiative (VET-PD). Non-white veterans are expected to make up nearly 40 percent of the overall U.S. veteran population by 2045. VET-PD will assemble 2,150 veteran participants from 22 VA sites over the next two years. Sites will enroll white and non-white participants at a 1:1 ratio ensuring the study captures a wide swath of the veteran population.

• Ambitious Program Expands Research to 58 Sites Globally: With Aligning Science Across Parkinson’s, an initiative dedicated to creating a more open, collaborative scientific community, MJFF works to expand data sets for international research efforts as part of GP2. With data now on 136 cohorts from 58 locations across the globe, GPS has collected, genotyped, and made available to researchers nearly 15,000 samples.

UAB Participates in Equitable Studies We are very fortunate that the University of Alabama at Birmingham led by Neurology and the Kirklin Clinic Movement Disorders Center Chairman, Dr. David Standaert is well connected with the scientific advisory board with the Michael J Fox Foundation. UAB will be a host site for these studies.

To learn more about the landmark study, the Parkinson’s Progression Markers initiative, and learn how you can help change how Parkinson’s is diagnosed, treated, and potentially prevented, go to https://www.michaeljfox.org/ppmi?om_cid=om-a1b1R00000AlObP

Source: Stephanie, Kate. Every Voice Counts: The Road to Equity in Research. Fox Focus. Spring/Summer 2023. Pages 10-11.