Recruiting · registry status

Learning from people who report living well with Parkinson’s

Researchers investigate habits, beliefs and treatments associated with better quality of life and fewer symptoms in people with Parkinson’s.

Learning by observing or collecting information · Study reference: NCT02194816

Plain-language introduction written with AI from the registry; not independently checked by a clinician. Read the original details below ↓

This registry record was last updated over six months ago, or its update date is missing. Recruitment may have changed. Confirm with the team before making plans.

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Looking for volunteers

Start (reported date): 2012-09
Main measurements finished (planned): 2030-12
Study finished (planned): 2030-12

Planned dates can move. A study finishing does not tell us when a paper will be published.

No results summary has been confirmed in the registry records we imported. See connected papers below; we keep checking after recruitment ends.

Changes we have recorded

2026-10-11 — recruiting

These are dates we observed a change, not necessarily the dates it happened.

Papers connected to this study

No connected paper has been found yet. The tracker checks the growing library for study identifiers and registry-linked publications.

Who can join?

Age 19 years and over · Does not accept healthy volunteers

These are starting points, not the full rules. The research team can tell you whether the study is right for your situation.

Read all the rules for taking part

Sex eligibility reported by registry: all

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)

Full study name & original research details

Official study title

Modifiable Variables in Parkinsonism (MVP) [Formerly CAM Care in PD]

Short title used by the registry

Modifiable Variables in Parkinsonism (MVP)

Original description

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.

Further description from the registry

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.

Conditions reported: Parkinson's Disease; Parkinsonism; MSA - Multiple System Atrophy; Progressive Supranuclear Palsy; Shy-Drager Syndrome; Corticobasal Degeneration; Dementia With Lewy Bodies; Pick Disease; Olivopontocerebellar Atrophies

Registry records for this study

Records are joined using registration identifiers. Titles alone do not establish that two studies are the same.

ClinicalTrials.gov · NCT02194816 ↗ — RECRUITING; checked 2026-10-13

Study type: Observational
Interventions: Not reported
Phases: Not reported
Sponsor: Bastyr University
Start date reported by registry: 2012-09 (Not reported)

Registry updated: 2022-03-25 · Status last verified by the registry submitter: 2022-03

Registry records retrieved 2026-10-13 (UTC). Individual records may have older updates. Recruitment and eligibility must be confirmed with the study team.

Contact the research team

Public study contacts supplied to the registry. Ask whether recruitment is still open and what participation involves.

Research Assistant · 425-602-3306 · neuroresearch@bastyr.edu

Study locations

Site status can differ from overall study status. “Status not reported” means local availability needs confirmation. Remote participation and travel arrangements must be checked with the team.

Bastyr University

Kenmore, Washington, United States

Recruiting

Laurie K Mischley, ND, PhD, MPH · 425-602-3306 · neuroresearch@bastyr.edu

Laurie K Mischley, ND, PhD, MPH

The original descriptions and participation rules come from the registry. Participation is voluntary and does not guarantee benefit.