Abstract Details

Title Racial differences in trust and risk disclosure preferences among older research volunteers screened for prodromal synucleinopathies

Topic Health Care Disparities

Presentation(s) P17 - Poster Session 17 (11:45 AM-12:45 PM)

Poster/Presentation
Number 11-002

Objective The equitable enrollment of minority populations in prodromal trials aimed at altering risk for neurodegenerative disorders including synucleinopathies is an important public health concern without a well-established solution. Views and opinions regarding prognostic counseling may influence health behaviors and research involvement in older adults at risk of neurodegenerative diseases.

Background We know relatively little about how race influences risk counseling preferences in older adults who are interested in participating in prodromal neurodegenerative disease research.

Design/Methods We conducted a brief mailed survey to two groups of older adult registered research volunteers: 100 adults enrolled in the Healthier Black Elders Center (HBEC) cohort centered in Detroit, MI and 100 adults in the Claude D. Pepper Older Americans Independence Center Research Participant Program at the University of Michigan (UM Pepper Center). Survey recipients were asked about neurological diagnoses and symptoms, frequency of ongoing medical and neurological care, trust of medical providers and researchers, and about hypothetical preferences related to risk disclosure for future neurodegenerative disorders.

Results 133 out of 200 survey recipients returned the mailed survey, 125 of whom did not have a co-existing diagnosis of a neurodegenerative disorder. 52/125 (41.6%) identified as being Black or African-American. Compared to non-Black respondents, Black respondents reported less trust in medical providers (t=2.02, p=0.045) & medical researchers (t=2.52, p=0.013) and a greater desire to be informed about the presence of fixed/unchangeable risk factors for neurodegenerative disorders (t=2.02, p=0.045).

Conclusions

Among older adults interested in participating in neurodegenerative disease research, race associates with differing degrees of researcher trust and preferences regarding risk factor counseling. These data have implications for the design and recruitment of representative cohorts in prodromal neurodegenerative research.

Authors/Disclosures
Vikas Kotagal, MD, FAAN (University of Michigan) PRESENTER	Dr. Kotagal has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Movement Disorders Society. The institution of Dr. Kotagal has received research support from NIH. The institution of Dr. Kotagal has received research support from VA Healthcare System.
Carly Marshall, MD (Rush Movement Disorders)	Dr. Marshall has nothing to disclose.
Isabelle Havis	Ms. Havis has nothing to disclose.

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