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

Background: 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 individua...

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Publicado en:Parkinson's Disease (20420080) Vol. 2025; pp. 1 - 8
Autores principales: Jones, Jacob D., Valenzuela, Yenny, Pacheco, Melissa, Nelson, Lonnie, Witt, Karsten
Formato: research tables/charts Journal Article
Publicado: Wiley-Blackwell 12/28/2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: 12/28/2025
      vid: 2025
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        10.1155/padi/3207928
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        atl: Research Participation Among American Indian and Alaskan Native Individuals Living With Parkinson's Disease.
      aug:
        au:
          Jones, Jacob D.
          Valenzuela, Yenny
          Pacheco, Melissa
          Nelson, Lonnie
          Witt, Karsten
        affil: Department of Psychology,, California State University,, San Bernardino, California, USA, calstate.edu
      sug:
        subj:
          Parkinson Disease
          Alaska Natives Psychosocial Factors
          Native Americans
          Research Subjects Psychosocial Factors
          Patient Participation Evaluation
          Ethnic Groups Psychosocial Factors
          Human
          Funding Source
          Male
          Female
          Aged
          Aged, 80 and Over
          Cross Sectional Studies
          Parkinson Disease Epidemiology
          United States
          Prevalence
          Self Report
          Genetic Screening
          Health Services Accessibility
          Healthcare Disparities
          Trust
          Minority Groups
          Attitude to Health
          Questionnaires
          Rural Health Services
          Health Knowledge
          Descriptive Statistics
          Comparative Studies
          Pearson's Correlation Coefficient
          Chi Square Test
          T-Tests
          Mann-Whitney U Test
          Scales
          Aged: 65+ years
          Aged, 80 & over
          Male
          Female
      ab: Background: 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. Methods: 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. Results: 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. Conclusion: 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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