MJFF Says Work Is Needed to Improve Health Equity in PD

Current knowledge about how Parkinson disease (PD) affects patients from different socioeconomic or ethnic groups is lacking, said The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and diverse groups are underrepresented in research.

Parkinson disease (PD) is no different than other disease states in which structural racism and inequality combine with social determinants of health to create health disparities, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) said in a position paper Thursday, calling for work in 4 areas to reduce health disparities.

Current knowledge about how PD affects patients from different socioeconomic or ethnic groups is lacking, said MJFF, and diverse groups are underrepresented in research.

PD affects nearly 1 million people in the United States and more than 6 million worldwide, and those numbers are expected to rise.

“An accurate reflection of the PD population in research is a critical challenge as genetic variation and other factors endemic to specific populations can greatly impact disease risk as well as effectiveness and metabolism of drugs,” said the authors in the position paper published in the Journal of Parkinson’s Disease.

The paper called for action in 4 areas:

  • Identifying barriers and solutions to research participation
  • Funding inclusive research with greater participant diversity
  • Building a clinician/researcher workforce committed to health equity
  • Supporting a more holistic understanding of PD

In research, data remain sparse or missing for many traditionally underrepresented groups: Black, Latino, Asian, Indigenous groups, LGBTQ+, and individuals of lower socioeconomic status, the authors 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 people with PD,” the authors concluded.

The paper also highlighted a few MJFF programs and funding opportunities in this area.

MJFF said it is currently reviewing 98 proposals from 25 countries in 6 continents for its new funding opportunity, Promoting Diversity, Equity, and Inclusion in Parkinson’s Research. The proposals are aimed at the study of incidence, etiology, and underlying pathology; diagnostic challenges; clinical presentation; health care behavior; health outcomes; and/or disease burden in underrepresented populations.

Funding decisions are expected in November 2021.

The organization is also piloting an effort within one of its core funding programs, the Therapeutic Pipeline Program, for interventional trials to integrate inclusive practices toward normalizing greater diversity in trial participation. It is also supporting a clinician-researcher workforce committed to inclusive research and health equity by establishing fellowships that train the next generation of specialists in those practices.

In addition, MJFF has a 5-year program at the National Institutes of Health, the Global Parkinson’s Genetic Program, to genotype more than  150,000 volunteers worldwide with an emphasis on underrepresented populations.

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