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Modifiable Variables in Parkinsonism (MVP)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT02194816
Recruitment Status : Recruiting
First Posted : July 18, 2014
Last Update Posted : March 25, 2022
Information provided by (Responsible Party):
Laurie Mischley, Bastyr University

Brief 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.

Condition or disease
Parkinson's Disease Parkinsonism MSA - Multiple System Atrophy Progressive Supranuclear Palsy Shy-Drager Syndrome Corticobasal Degeneration Dementia With Lewy Bodies Pick Disease Olivopontocerebellar Atrophies

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 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.

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Study Type : Observational
Estimated Enrollment : 2000 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Modifiable Variables in Parkinsonism (MVP) [Formerly CAM Care in PD]
Study Start Date : September 2012
Estimated Primary Completion Date : December 2030
Estimated Study Completion Date : December 2030

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.

Primary Outcome Measures :
  1. CAM Care for PD survey [ Time Frame: 5 years ]
    This survey has been developed to identify the complementary and alternative therapies most commonly used by individuals with PD. Results will be reported with descriptive statistics.

  2. PROMIS: Global Health [ Time Frame: 5 years ]
    This outcome measure will be used to assess general health and well-being in the cohort.

  3. Patient-Reported Outcomes in PD (PRO-PD) [ Time Frame: 5 years ]
    This outcome measure is a series of 33 slider bars, developed for this study, to evaluate the individual's perception of symptom severity. The cumulative score for all 33 listed symptoms will be reported as the PRO-PD score.

Secondary Outcome Measures :
  1. Qualitative [ Time Frame: 5 years ]
    Participants will be given 'free space' to provide additional information they consider relevant.

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   19 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Any individual with PD is invited to participate.

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)

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT02194816

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Contact: Research Assistant 425-602-3306

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United States, Washington
Bastyr University Recruiting
Kenmore, Washington, United States, 98028
Contact: Laurie K Mischley, ND, PhD, MPH    425-602-3306   
Principal Investigator: Laurie K Mischley, ND, PhD, MPH         
Sponsors and Collaborators
Bastyr University
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Principal Investigator: Laurie K Mischley, ND, PhD, MPH Bastyr University
Additional Information:
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Responsible Party: Laurie Mischley, Assistant Research Scientist, Bastyr University Identifier: NCT02194816    
Other Study ID Numbers: BU-13A-1332
First Posted: July 18, 2014    Key Record Dates
Last Update Posted: March 25, 2022
Last Verified: March 2022
Keywords provided by Laurie Mischley, Bastyr University:
Parkinson's Disease
Complementary and Alternative
Additional relevant MeSH terms:
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Parkinson Disease
Multiple System Atrophy
Shy-Drager Syndrome
Supranuclear Palsy, Progressive
Parkinsonian Disorders
Lewy Body Disease
Pick Disease of the Brain
Olivopontocerebellar Atrophies
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases
Neurocognitive Disorders
Mental Disorders
Pathological Conditions, Anatomical
Primary Dysautonomias
Autonomic Nervous System Diseases
Vascular Diseases
Cardiovascular Diseases
Ocular Motility Disorders
Cranial Nerve Diseases