Modifiable Variables in Parkinsonism (MVP)

  • STATUS
    Recruiting
  • End date
    Dec 5, 2030
  • participants needed
    2000
  • sponsor
    Bastyr University
Updated on 5 April 2022
dementia
atrophy
parkinson's disease
parkinsonism
progressive supranuclear palsy
supranuclear palsy
corticobasal degeneration

Summary

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.

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.

Details
Condition Parkinson's Disease, Parkinsonism, MSA - Multiple System Atrophy, Progressive Supranuclear Palsy, Shy-Drager Syndrome, Corticobasal Degeneration, Dementia With Lewy Bodies, Pick Disease, Olivopontocerebellar Atrophies
Clinical Study IdentifierNCT02194816
SponsorBastyr University
Last Modified on5 April 2022

Eligibility

Yes No Not Sure

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)
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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