Background/Objectives The equitable enrollment of minority participants in synucleinopathy trials is an emerging public health concern. Differing views regarding risk disclosure may influence research involvement in at-risk adults. Methods We conducted a brief mailed survey, including questions about trust and hypothetical risk disclosure preferences, to 100 participants in the Healthier Black Elders Center cohort in Detroit, MI and 100 participants in the Claude D. Pepper Older Americans Independence Center Research Participant Program at the University of Michigan. Results 125 recipients without a diagnosis of a neurodegenerative disorder returned the survey, 52 (41.6%) of whom identified as being Black or African American. Black respondents reported less trust in medical providers (t=2.02, p=0.045) and medical researchers (t=2.52, p=0.013) and a greater desire to be informed about the presence of unchangeable risk factors for neurodegenerative disorders (t=2.02, p=0.045). Conclusions These findings have implications for the recruitment of representative populations in prodromal neurodegenerative research.
Background and ObjectivesChronic health conditions are influenced by social determinants of health (SDH) including neighborhood-linked markers of affluence. We explored whether neighborhood socioeconomic factors differ in people with different types of clinical movement disorders (MDs).MethodsWe conducted a retrospective study of patients seen in MD clinics at our center in 2021. Patient data were linked to the US National Neighborhood Data Archive linked to US census tract data. We evaluated variations in neighborhood socioeconomic factors across 8 different categories of MDs.ResultsCompared with the neighborhoods of patients with Parkinson disease, neighborhoods of patients with cerebellar ataxias, functional movement disorders, and Huntington disease were characterized by higher proportions of people earning less than 15,000 US dollars/year, people receiving public assistance, and people with less than a high school diploma.DiscussionNeighborhood-linked SDH vary among different MDs. These findings have implications for public health interventions aimed at improving the care of people affected by MDs.
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