Research Participation Among American Indian and Alaskan Native Individuals Living With Parkinson's Disease

There is a notable gap in racial and ethnic representation in Parkinson's disease (PD) research, particularly among American Indian and Alaska Native (AIAN) populations, despite a higher prevalence of PD in these groups. This study investigated research participation among AIAN individuals in terms of perceived access to research opportunities, willingness to participate, and potential concerns about participation.

Data were obtained from the online Fox Insight (FI) study. A total sample of 4412 individuals who self-reported their race as White (n = 4363) or AIAN (n = 49) were selected. The Attitudes and Beliefs Regarding Research and Genetic Testing for PD survey was administered to assess participants' attitudes and knowledge about the research process, opportunities, and preferences.

A significantly smaller proportion of AIAN individuals (34.7%) reported concurrent or past participation in PD research compared with White non-AIAN participants (52.9%). Despite this lower participation rate and limited knowledge of research opportunities, a large majority of AIAN individuals (89.8%) expressed a willingness to participate in research. Additionally, both AIAN and White non-AIAN participants reported similar rates of concerns about research participation. Among AIAN individuals, the most common barriers were distance from research site, transportation, and time commitments.

These findings highlight that low research participation among AIAN individuals may be more associated with low engagement from the research community rather than unwillingness or relatively greater research concerns. Building stronger partnerships with tribal communities and involving community leaders to build trust may improve research representation among AIAN populations.