Access-PD Study

Are you taking care of a family member with Parkinson’s Disease?

Asian Women for Health is a proud community partner of Tufts University School of Medicine on the Research Study, ACCESS-PD: Advancing Comprehensive Care & Enhancing Service  Standards in Parkinson’s Disease among Asian Americans. We are seeking family members of people with Parkinson’s to share their experience providing care and seeking diagnosis and treatment. To be eligible, the care partner or the family member must be of Asian descent.

Survey Eligibility Requirements

  • Family care partner must be 18 years or older.
  • Either the family care partner or the family member with PD must be of Asian descent (self-identified as Asian American).
  • One care partner per family must complete the survey.
  • A family care partner is defined as anyone who provides care as a spouse, child, sibling, parent, grandchild, niece/nephew, or cousin for a family member with Parkinson’s disease.
  • Participants will complete an online survey that takes approximately 45 minutes.
  • The survey is available in English, Vietnamese, and Traditional and Simplified Chinese.
  • After completion, participants will receive a $25 Amazon e-gift card to thank them for their time.
  • Survey responses will be kept anonymous and confidential. The survey is completely voluntary.

ACCESS-PD is a two-year research study to determine the cultural and systemic barriers that Asian Americans face in accessing care and participating in research studies for Parkinson’s disease (PD).

This innovative study examines PD patients and clinicians and two other culturally important stakeholders – family care partners and community members of PD patients. The study is in partnership with Tufts University School of Medicine and funded by the Michael J. Fox Foundation.
​
As a community partner, Asian Women for Health plays a key role in ensuring that the study engages and informs the Asian American community in a culturally appropriate and responsive manner. ​

dept-of-public-health-and-comm-medicine-horiz-lockup-bk-bl_orig

While nearly one million people in the US are living with Parkinson’s disease (PD), Asian Americans have largely been excluded from PD research. To our knowledge, no studies to date have examined barriers to PD care, specifically among Asian Americans. In a 2016 systematic review examining racial disparities in PD diagnosis, treatment, and access to care, only five of 12 studies included Asian Americans, and only one study in 2014 included enough Asian Americans to examine the subgroup separately from other racial subgroups.
​​
There is a significant gap in knowledge about the extent to which Asian Americans delay diagnosis, care, and clinical research inclusion for PD due to individual, cultural, and structural barriers affecting their experience. ACCESS-PD aims to be the first step in closing the gap by specifically examining the Asian American experience with PD for patients, care partners, clinicians, and community advocates.

Using mixed methods and a community-based participatory research approach, ACCESS-PD will be the first step towards understanding barriers to access to care and enhancing service standards for Asian Americans with PD.

The insights and learnings from our research will help create culturally appropriate resources for patients, care partners and clinicians, and community and patient education programs to increase PD literacy among Asian Americans.

Download an Informational Flyer

informational flyer simplified chinese
informational flyer traditional chinese
Info flyer english
opt_accesspd_survey_vietnamese

If you have any additional questions, please contact:
accessPD@asianwomenforhealth.org
617-938-3637 ext. 408