Improve access to Parkinson care
- Trial ID
- NCT05532982
- Official Title
- Barriers and Motivators Associated With Access to Care and Participation in Research Studies for Parkinson's Disease Among Asian Americans
- Goal
- Improve access to Parkinson care
- Status
- RECRUITING
- Sponsor
- Tufts University
- Study Type
- OBSERVATIONAL
- Enrollment
- 430 participants
- Conditions
- Parkinson's Disease
- Interventions
- Interviews and Surveys
Summary For Families
The goal is to identify the specific barriers and motivators that affect access to Parkinson's care and willingness to join research among Chinese and Vietnamese Americans, so future services and studies can be more reachable and culturally responsive. Researchers will review Tufts Movement Disorders Clinic records from 2010 to 2019 and gather real-world experiences through interviews, focus groups, and surveys by phone or Zoom with patients, care partners, clinicians, and community advocates to pinpoint issues like language access, transportation, trust, and knowledge about research. Eligible participants are adults 18 and older, focusing on Chinese or Vietnamese people with Parkinson's and their primary care partners, plus clinicians and community advocates who work with older Asian Americans. Patients with juvenile-onset Parkinson's are excluded, and people with dementia or taking medications for cognitive impairment are not eligible for the interviews.
Locations
- Tufts University School of Medicine, Boston, Massachusetts, United States
Frequently Asked Questions
- What is this trial testing?
- This trial is studying Interviews and Surveys. The goal is to identify the specific barriers and motivators that affect access to Parkinson's care and willingness to join research among Chinese and Vietnamese Americans, so future services and studies can be more reachable and culturally responsive. Researchers will review Tufts Movement Disorders Clinic records from 2010 to 2019 and gather real-world experiences through interviews, focus groups, and surveys by phone or Zoom with patients, care partners, clinicians, and community advocates to pinpoint issues like language access, transportation, trust, and knowledge about research. Eligible participants are adults 18 and older, focusing on Chinese or Vietnamese people with Parkinson's and their primary care partners, plus clinicians and community advocates who work with older Asian Americans. Patients with juvenile-onset Parkinson's are excluded, and people with dementia or taking medications for cognitive impairment are not eligible for the interviews.
- Who can participate?
- Participants must be at least 18 Years.
- Where is this trial located?
- This trial is recruiting at 1 location.
- Does it cost anything to join?
- No. There is no cost to participate. Study-related care and treatment are provided at no charge.
- How long does the trial last?
- This trial is estimated to last approximately 2 years and 2 months.
- Will I get the real drug or a placebo?
- It depends on the trial design. Some Parkinson's trials are placebo controlled, meaning a portion of participants get an inactive comparison while others get the experimental treatment. Some use crossover designs so everyone eventually receives the active treatment at some point. Observational trials do not use a placebo at all because they are not testing a new treatment. The consent form for any specific trial spells out the design and your odds of being assigned to placebo before you enroll.
- How often will I need to visit the study site?
- Visit frequency varies by trial. Many Parkinson's studies require an in person visit every 4 to 12 weeks during the active treatment phase, with shorter or longer gaps depending on the design. The site coordinator can give you the full visit schedule before you sign anything, so you know what the time commitment looks like.
- Can I leave the trial if I change my mind?
- Yes. You can withdraw from any clinical trial at any time, for any reason, without affecting your standard medical care. Trials are voluntary by law. The team may ask if you are willing to do a brief exit visit so they can collect safety information, but you are not obligated.
- Will travel or parking be reimbursed?
- Many trials reimburse for parking, mileage, and sometimes lodging if the site is far from your home. Reimbursement policies vary by sponsor and site. When you contact the trial team, ask specifically what is covered and how reimbursement is processed.
- Can my spouse or care partner come with me to visits?
- In most cases yes, and it is often encouraged. Care partners can help with notes, questions, and getting home safely after a long visit. Some study assessments do need to happen one on one, but care partners are usually welcome for the rest of the appointment.