Asian Women for Health (AWFH) 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.
Are you taking care of a family member with Parkinson’s?
We are seeking family members of people with Parkinson’s disease 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.
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For Survey Eligibility:
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If eligible, the participant will:
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* By anyone of Asian descent, we seek anyone with self-identified as Asian Americans.
* By family care partner, we seek anyone who provides care as a spouse, child, sibling, parent, grandchild, niece/nephew, or cousin for a family member with Parkinson’s disease.
* By family care partner, we seek anyone who provides care as a spouse, child, sibling, parent, grandchild, niece/nephew, or cousin for a family member with Parkinson’s disease.
Participate in the ACCESS-PD Survey!
What is ACCESS-PD?
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.
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.
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Why is it important to research Parkinson’s Disease among Asian Americans?
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.
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.
What’s our impact on the community?
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.
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.