Recruiting

Observational Study

Sponsor:

Tufts University

Code:

NCT05532982

Conditions

Parkinson's Disease

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Interventions

Interviews and Surveys

Study Details

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.

Conditions

Parkinson's Disease

Study ID

NCT05532982

Start date

Oct 15, 2022

Status verified date

May, 2024

Completion date

Nov 30, 2024

Anticipated

Primary completion date

Nov 30, 2024

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Inclusion Criteria:

  • Objective 1 (chart review):

1. Chinese or Vietnamese ethnicity
2. Age: 18 years of age or older
3. 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):

1. Asian American person diagnosed with PD:

1. Diagnosed with PD
2. Chinese or Vietnamese ethnicity
3. Age: 18 years of age or older
4. Able to participate in an interview by phone or on Zoom
5. Able to provide informed consent
2. Primary caregivers of Asian American PD patients recruited into the study:

1. Age: 18 years of age or older
2. First-degree family member or spouse
3. Self-identified as a primary caregiver of an Asian American person with PD
4. Able to participate in an interview by phone or on Zoom
5. Able to provide informed consent
3. Clinicians:

1. Any clinician (e.g. primary care provider, neurologist, resident, nurse, nurse practitioner, etc) that takes care of PD patients.
2. Age: 18 years of age or older
4. Key advocates in the Asian American community working specifically with the Asian elderly population.

1. Employee or volunteer for a community-based organization working with the Asian elderly population (e.g. Greater Boston Chinese Golden Age Center, South Cove Manor, and Midtown Home Health Services) or other organizations working with PD patients and the elderly (e.g. Massachusetts Council on Aging and the Massachusetts Chapter of the American Parkinson's Disease Association)
2. Age: 18 years of age or older
3. Able to participate in a focus group discussion on Zoom

Objective 3 (surveys of care partners of Asian American individuals with PD):

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1. Chinese or Vietnamese ethnicity
2. Primary care partner of a family member with Parkinson's Disease
3. Age: 18 years of age or older
4. Care partner or family member with Parkinson's Disease must be of Asian descent

Exclusion Criteria:

Objective 1:

1. Patients diagnosed with juvenile-onset Parkinson's Disease

Objective 2:

PD patients only:

1. Patients with juvenile-onset Parkinson's Disease
2. Patients diagnosed with dementia
3. Patients on medication for cognitive impairment, e.g., anti-psychotics, donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne)

No exclusion criteria for other stakeholder groups (caregivers, clinical providers, key community advocates).

Objective 3:

1. Patients with juvenile-onset Parkinson's Disease

Study Design

Enrollment

430 participants

Anticipated

Interventions and Outcome Measures

Arms

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

Interviews and Surveys

Qualitative interviews and surveys

Primary outcome measure

  • Delay in seeking care [ Time Frame: November 2022 - August 2024 ]

Central Contacts and Locations

Central contacts

Locations

Tufts University School of Medicine

Recruiting

Boston, Massachusetts, United States, 02111

Contacts

More Information

Sponsor

Tufts University

Last update posted

May 20, 2024

Last verified

May, 2024

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Tufts University on 2024-05-20.