Parkinson’s disease (PD) is no different from other disease states in which structural racism and inequalities combine with social determinants of health to create health disparities, the Michael J. Fox Foundation said Thursday. for Parkinson’s Disease Research (MJFF) in a position paper, calling for work in 4 areas to reduce health disparities.
Current knowledge about how PD affects patients of different socioeconomic or ethnic groups is lacking, the MJFF said, and various groups are under-represented in the research.
PD affects nearly one million people in the United States and over 6 million worldwide, and those numbers are expected to increase.
“Accurately reflecting the population of PD in research is a critical challenge, as genetic variation and other factors endemic to specific populations can have a dramatic impact on disease risk as well as on efficacy and metabolism. drugs, ”the authors said in the position paper published in the Parkinson’s Disease Journal.
The document called for action in 4 areas:
- Identify obstacles and solutions to participation in research
- Fund inclusive research with a greater diversity of participants
- Build a workforce of clinicians / researchers committed to health equity
- Support a more holistic understanding of PD
In the research, data remains scarce or missing for many traditionally under-represented groups: Blacks, Latinos, Asians, Indigenous groups, LGBTQ + and people of lower socioeconomic status, the authors said.
“Our understanding of the etiology, clinical presentation and treatment of PD is advancing, but remains far from complete. If preclinical and clinical research in PD continues in its failure to represent all people with the disease, we will never develop a comprehensive understanding of the biological basis of the disease, nor can we be confident that treatments will work for all people. with PD ”, the authors concluded.
The document also highlighted some MJFF funding programs and opportunities in this area.
The MJFF said it is currently reviewing 98 proposals from 25 countries across 6 continents for its new funding opportunity, Promoting Diversity, Equity and Inclusion in Parkinson’s Research. The proposals aim to study the incidence, etiology and underlying pathology; diagnostic challenges; clinical presentation; health care behavior; health outcomes; and / or the disease burden in under-represented populations.
Funding decisions are expected in November 2021.
The organization is also leading an effort within one of its core funding programs, the Therapeutic Pipeline Program, for interventional trials to incorporate inclusive practices to standardize greater diversity in trial participation. It also supports a workforce of clinician-researchers committed to inclusive research and health equity by creating scholarships that train the next generation of specialists in these practices.
In addition, the 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 a focus on under-represented populations.