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Identifying Barriers and Motivators Associated with Access to Care and Participation in Genetic Research Studies for Parkinson's Disease among Asian Americans

Study Rationale: Clinicians have observed that Asian Americans are older and have had symptoms for a longer period of time than Whites when they are diagnosed with Parkinson’s disease (PD). In addition, Asian Americans are less likely to participate in research studies on PD. Only one published study has examined barriers to seeking care and treatment for PD among Asian Americans; this study found that Chinese Americans were much more likely than Whites to believe that PD is a natural result of aging and are therefore slower to seek care for their symptoms.

Hypothesis: We hypothesize that cultural norms, limited English language fluency, and low socioeconomic status are among the factors associated with the delay in care observed among Asian Americans with PD. Furthermore, fear and misperceptions about genetics research and barriers within the health care system likely deter their participation in research studies.

Study Design: This three-part study will first review the medical records of all Asian Americans with PD seen at Tufts Medical Center over the past five years to determine how long individuals experienced symptoms before diagnosis. Next, interviews will be conducted with patients, primary caregivers, clinical providers, and Asian community organization staff to determine what access to care and research study participation barriers exist for Asian Americans with PD. Finally, a larger population survey will determine the factors that are most highly associated with delays in Asian Americans with PD seeking care and participating in PD research studies.

Impact on Diagnosis/Treatment of Parkinson’s disease: This study will identify cultural and institutional factors preventing Asian Americans with PD from seeking care and participating in research studies, information that will be used to develop culturally and linguistically appropriate programs and resources to facilitate improvements in PD care and inclusion in PD research in the Asian American community.

Next Steps for Development: This study will lead to improved care and treatment for Asian Americans with PD through earlier diagnosis. In addition, this study will facilitate inclusion of more Asian Americans in research studies, which is imperative for understanding the cause of PD and the impact of promising new genetic therapies in this population.


  • Alice Mei-Hua Tang, PhD, ScM

    Boston, MA United States

  • Chien-Chi Huang, MS

    Somerville, MA United States

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