Identify modifiable factors slowing progression
- Trial ID
- NCT02194816
- Official Title
- Modifiable Variables in Parkinsonism (MVP) [Formerly CAM Care in PD]
- Goal
- Identify modifiable factors slowing progression
- Status
- RECRUITING
- Sponsor
- Bastyr University
- Study Type
- OBSERVATIONAL
- Enrollment
- 2000 participants
- Conditions
- Parkinson's Disease, Parkinsonism, MSA - Multiple System Atrophy, Progressive Supranuclear Palsy, Shy-Drager Syndrome, Corticobasal Degeneration, Dementia With Lewy Bodies, Pick Disease, Olivopontocerebellar Atrophies
Summary For Families
The goal is to find everyday, changeable factors that affect symptoms and progression in Parkinson's and related parkinsonism disorders, so simple care or lifestyle changes might improve quality of life. Participants complete detailed online surveys about symptoms, medications, lifestyle and environmental exposures every six months for five years, letting researchers link those modifiable variables to outcomes; no drugs or devices are being tested. The study is enrolling adults 19 and older with Parkinson's disease, parkinsonism, or Parkinson-plus syndromes who can read and write English, have internet access and an email address, and are willing to spend about 90 minutes on surveys every six months.
Locations
- Bastyr University, Kenmore, Washington, United States
Frequently Asked Questions
- What is this trial testing?
- This trial is studying an experimental treatment. The goal is to find everyday, changeable factors that affect symptoms and progression in Parkinson's and related parkinsonism disorders, so simple care or lifestyle changes might improve quality of life. Participants complete detailed online surveys about symptoms, medications, lifestyle and environmental exposures every six months for five years, letting researchers link those modifiable variables to outcomes; no drugs or devices are being tested. The study is enrolling adults 19 and older with Parkinson's disease, parkinsonism, or Parkinson-plus syndromes who can read and write English, have internet access and an email address, and are willing to spend about 90 minutes on surveys every six months.
- Who can participate?
- Participants must be at least 19 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 18 years and 3 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.