RECRUITING

Parkinson's Disease in Asian Americans

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Barriers and Motivators Associated With Access to Care and Participation in Research Studies for Parkinson's Disease Among Asian Americans

Quick Facts

Study Start:2022-10-15

Study Completion:2024-11-30

Study Type:Not specified

Phase:Not Applicable

Enrollment:Not specified

Status:RECRUITING

Study ID

NCT05532982

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years

Sexes Eligible for Study:ALL

Accepts Healthy Volunteers:Yes

Standard Ages:ADULT, OLDER_ADULT

Inclusion Criteria	Exclusion 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 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	1. Patients diagnosed with juvenile-onset Parkinson's Disease 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) 1. Patients with juvenile-onset Parkinson's Disease

Inclusion Criteria

Exclusion 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
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

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

Contacts and Locations

Study Contact

Alice Tang, PhD

CONTACT

617-636-2140

alice.tang@tufts.edu

Naheed Esar

CONTACT

nesar@asianwomenforhealth.org

Study Locations (Sites)

Tufts University School of Medicine

Boston, Massachusetts, 02111

United States

Collaborators and Investigators

Sponsor: Tufts University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2022-10-15

Study Completion Date2024-11-30

Study Record Updates

Study Start Date2022-10-15

Study Completion Date2024-11-30

Terms related to this study

Additional Relevant MeSH Terms

Parkinson's Disease