Parkinson's Disease in Asian Americans
Barriers and Motivators Associated With Access to Care and Participation in Research Studies for Parkinson's Disease Among Asian Americans
1 other identifier
observational
430
1 country
1
Brief Summary
The ultimate goal of this project is to use the findings to develop culturally appropriate programs and resources that can be disseminated to key stakeholders to improve access to PD care and increase inclusivity in PD research for Asian Americans. This study will serve as a first step towards developing broader community and patient education programs and active outreach campaigns to increase PD-specific literacy among Asian Americans. The results from this study will elucidate the role that language barriers, cultural perceptions, family influence, and other predisposing, enabling, or need factors have on delaying care for PD among Asian Americans. It will also provide much needed insight on how to improve inclusion of Asian Americans in PD research studies.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2022
Typical duration for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
September 6, 2022
CompletedFirst Posted
Study publicly available on registry
September 8, 2022
CompletedStudy Start
First participant enrolled
October 15, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
November 30, 2024
CompletedStudy Completion
Last participant's last visit for all outcomes
November 30, 2024
CompletedMay 20, 2024
May 1, 2024
2.1 years
September 6, 2022
May 16, 2024
Conditions
Outcome Measures
Primary Outcomes (1)
Delay in seeking care
For the main outcome (delay in seeking care), the investigators will rely on self-report. Data obtained from Objectives 1 and 2 will be used to inform the development of a survey question (or a series of questions) that will capture this construct. The questionnaire will be piloted among a subgroup of participants recruited from the TMC MDC to calibrate the self-reported measure against data obtained from their medical records.
November 2022 - August 2024
Study Arms (4)
Parkinson's disease patients
Parkinson's disease patients of Asian descent
Parkinson's disease patients' care-givers
Care partners of Parkinson's Disease patients of Asian descent
Clinicians
Clinical providers of patients with Parkinson's disease, including physicians, nurses, nurse practitioners, physician assistants, physical therapists, etc.
Community stakeholders
Advocates for the Asian American community
Interventions
Qualitative interviews and surveys
Eligibility Criteria
Chinese and Vietnamese patients with Parkinson's disease and their care partners, clinicians, and community advocates.
You may qualify if:
- Objective 1 (chart review):
- Chinese or Vietnamese ethnicity
- Age: 18 years of age or older
- Diagnosed or presented for PD care at the Tufts Medical Center (TMC) Movement Disorders Clinic (MDC) from January 1, 2010 to December 31, 2019.
- Objective 2 (qualitative study):
- Asian American person diagnosed with PD:
- Diagnosed with PD
- Chinese or Vietnamese ethnicity
- Age: 18 years of age or older
- Able to participate in an interview by phone or on Zoom
- Able to provide informed consent
- Primary caregivers of Asian American PD patients recruited into the study:
- Age: 18 years of age or older
- First-degree family member or spouse
- Self-identified as a primary caregiver of an Asian American person with PD
- +15 more criteria
You may not qualify if:
- Objective 1:
- \. Patients diagnosed with juvenile-onset Parkinson's Disease
- Objective 2:
- PD patients only:
- Patients with juvenile-onset Parkinson's Disease
- Patients diagnosed with dementia
- Patients on medication for cognitive impairment, e.g., anti-psychotics, donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne)
- Objective 3:
- \. Patients with juvenile-onset Parkinson's Disease
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Tufts Universitylead
- Naheed Esar, Asian Women for Healthcollaborator
Study Sites (1)
Tufts University School of Medicine
Boston, Massachusetts, 02111, United States
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Professor
Study Record Dates
First Submitted
September 6, 2022
First Posted
September 8, 2022
Study Start
October 15, 2022
Primary Completion
November 30, 2024
Study Completion
November 30, 2024
Last Updated
May 20, 2024
Record last verified: 2024-05