Modifiable Variables in Parkinsonism (MVP)
Purpose
We are trying to identify factors associated with improved quality of life and fewer PD symptoms. We are attempting to identify practices, beliefs, and therapies used by individuals who report excellent quality of life, few PD symptoms, and reduced rates of progression. After agreeing to participate, we will ask participants to fill our questionnaires about their experience with PD, their health in general, along with their food intake every six months for five years.
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
Eligibility
- Eligible Ages
- Over 19 Years
- Eligible Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- Parkinson's disease (PD) - Parkinsonism - Parkinson-plus syndromes (e.g. Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal degeneration (CBGD), Dementia with Lewy bodies) - Must have online access, an email address, basic computer literacy - Must be willing to complete online surveys every 6 months for 5 years
Exclusion Criteria
- Inability to read/write English - Inability or unwillingness to complete surveys every six (6) months (~90 min)
Study Design
- Phase
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Parkinson's Disease Patients | Any individuals who has a diagnosis of Parkinson's disease (PD), parkinsonism, or a parkinson's plus syndrome will be allowed to participate. |
Recruiting Locations
Kenmore 5799587, Washington 5815135 98028
More Details
- Status
- Recruiting
- Sponsor
- Bastyr University
Detailed Description
This is a prospective, observational study designed to describe disease progression, symptom change, quality of life, diet and lifestyle habits among patients with Parkinson's disease (PD). This study will identify and describe those individuals with the highest quality of life and least amount of disease activity, in order to describe medication, diet, and lifestyle patterns associated with a lack of PD disease progression and high quality of life. Participants will be asked to complete online surveys every six months for five years. The time requirement is about an hour to an hour and a half every six months. Participants do not need to answer questions if they do not feel comfortable answering. At each six month time point we will send participants an email with the link to the CAM Care in PD survey, a questionnaire about health and wellbeing (completed in REDCap). After participants have completed this survey we will send participants a link to the second survey, about dietary intake (completed on ASA24.gov). Because there is a designated window of time during which surveys must be completed, participants may receive a gentle reminder from us if time is running out. This study is not designed to provide care. Participants are encouraged to consult with any providers you wish. Participants will not directly benefit from the study, but information gathered during the course of this study may help us begin to assess the longer-term effects of complementary and integrative care on health, disease progression and quality of life in PD patients.