Modifiable Variables in Parkinsonism (MVP)

NCT02194816 | Recruiting

• 1 other identifier: BU-13A-1332
• Study Type: observational
• Target: 2,000
• Locations: 1 country
• Sites: 1

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.

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

Keywords

Parkinson's Disease; PD; Complementary and Alternative; CAM

Outcome Measures

Primary Outcomes (3)

• CAM Care for PD survey

  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.

  5 years

• PROMIS: Global Health

  This outcome measure will be used to assess general health and well-being in the cohort.

  5 years

• Patient-Reported Outcomes in PD (PRO-PD)

  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.

  5 years

Secondary Outcomes (1)

• Qualitative

  5 years

Study Arms (1)

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.

Eligibility Criteria

• Age: 19 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Any individual with PD is invited to participate.

You may qualify if:

• 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

You may not qualify if:

• Inability to read/write English
• Inability or unwillingness to complete surveys every six (6) months (\~90 min)

Sponsors & Collaborators

• Bastyr University: lead

Study Sites (1)

Bastyr University

Kenmore, Washington, 98028, United States

RECRUITING

Related Publications (3)

• Tomlinson CL, Stowe R, Patel S, Rick C, Gray R, Clarke CE. Systematic review of levodopa dose equivalency reporting in Parkinson's disease. Mov Disord. 2010 Nov 15;25(15):2649-53. doi: 10.1002/mds.23429.

  PMID: 21069833 BACKGROUND

• Meissner WG, Frasier M, Gasser T, Goetz CG, Lozano A, Piccini P, Obeso JA, Rascol O, Schapira A, Voon V, Weiner DM, Tison F, Bezard E. Priorities in Parkinson's disease research. Nat Rev Drug Discov. 2011 May;10(5):377-93. doi: 10.1038/nrd3430.

  PMID: 21532567 BACKGROUND

• Positive Deviance Initiative. 2010 [cited 2012 30 Dec 2012]; Available from: http://www.positivedeviance.org/about_pd/index.html

  BACKGROUND

MeSH Terms

Conditions

Parkinson Disease; Parkinsonian Disorders; Shy-Drager Syndrome; Supranuclear Palsy, Progressive; Corticobasal Degeneration; Lewy Body Disease; Pick Disease of the Brain; Olivopontocerebellar Atrophies

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Multiple System Atrophy; Primary Dysautonomias; Autonomic Nervous System Diseases; Hypotension; Vascular Diseases; Cardiovascular Diseases; Ophthalmoplegia; Ocular Motility Disorders; Cranial Nerve Diseases; Tauopathies; Paralysis; Neurologic Manifestations; Eye Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Dementia; Neurocognitive Disorders; Mental Disorders; Frontotemporal Dementia; Frontotemporal Lobar Degeneration; Spinocerebellar Degenerations; Cerebellar Diseases; Spinal Cord Diseases; Heredodegenerative Disorders, Nervous System; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

• Laurie K Mischley, ND, PhD, MPH

  Bastyr University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Research Assistant

CONTACT

425-602-3306; neuroresearch@bastyr.edu

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Research Scientist

Study Record Dates

• First Submitted: July 17, 2014
• First Posted: July 18, 2014
• Study Start: September 1, 2012
• Primary Completion (Estimated): December 1, 2030
• Study Completion (Estimated): December 1, 2030
• Last Updated: March 25, 2022

Record last verified: 2022-03

Locations

US (1)