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“I participate because it is the right thing to do, for myself, for my children, and for the millions of people who have Parkinson’s disease.  Without participation there will be no cure.” –Mike, Diagnosed 7 years

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If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.

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Unveiling the Natural History of Quality of Life and Mobility Decline in Persons with Parkinson’s Disease

Official Study Title: Unveiling the Natural History of Quality of Life and Mobility Decline in Persons with Parkinson’s Disease: A Prospective Cohort Study
Sponsor: Davis Phinney Foundation, Parkinson's Disease  Parkinson's DiseaseA chronic, slowly progressive disease of the nervous system characterized by the combination of tremor, rigidity, bradykinesia and stooped posture, among other symptoms. Foundation
Clinicaltrials.gov ID:
Study ID:

Summary

Little is known about how Parkinson’s disease (PD) impacts the quality of life and day to day function of people living with this disease.  Investigators of this study are interested in learning more about the changes in quality of life and mobility that occur in people with PD over the course of the disease.  People with PD will be asked to answer questions about their quality of life and daily function in addition to participating in tests which examine walking and balance.   

In addition, the investigators of this study are interested in participants’ views on exercises and their exercise habits.  Previous research has demonstrated that exercise improves quality of life and mobility in people with PD.  Participants will be asked to answer questions about the types of activities and exercise they are engaging in, their attitudes and beliefs about exercise and the barriers that may limit participation in exercise.  This information will help investigators optimize the design of exercise programs for people with PD.  

Participants will undergo this evaluation process once every six months over a two-year period so that investigators can examine the changes that occur in quality of life, mobility and exercise habits over the course of the disease. 

Study Phase

Not Applicable
What is a study phase?

Symptoms Addressed: Study does not address symptoms

Study does not address symptoms

Time Commitment

  • More than six months
  • Examinations every 6 months for 2 years

Eligibility

  • Minimum Age: 40
  • Gender(s) Accepted: Either

Inclusion Criteria

  • Male or a female at least 40 years of age or older
  • PD diagnosed by a neurologist  NeurologistA physician skilled in the diagnosis and treatment of diseases of the nervous system.
  • Mild to moderate disease severity
  • Living in the Community (not institutionalized)
  • Able to attend assessment sessions
  • Able to provide informed consent  Informed ConsentThe process of providing information to potential study participants to help them decide whether or not to enroll in a specific clinical trial. (either individually or via a care giver)

Exclusion Criteria

  • Diagnosis of atypical Parkinsonism
  • Late-stage PD, or high disease severity
  • Previous surgical management of PD (pallidotomy, DBS)

Enrollment

Expected Enrollment: 200 (US)
Date Enrollment Began: Aug 2009
Date Enrollment Ends: Dec 2011
Last Updated Date: Aug 18 2009
Trial Post Date: Aug 18 2009
Website:

Primary Contacts and Locations

All States

  • Heather Boies
    Research Coordinator
    Phone: (801) 581-7970
    All States
    USA

Local Contacts and Locations

Alabama

  • Matthew Ford
    The University of Alabama at Birmingham; School of Health Professions
    mford@uab.edu
    Phone: (205) 934-8517
    1530 3rd Ave South, SHP 334
    Birmingham, AL 35294
    USA

Massachusetts

  • Terry Ellis
    Boston University; College of Health and Rehabilitation Science
    tellis@bu.edu
    Phone: (617) 353-7525
    635 Commonwealth Avenue
    Boston, MA 02215
    USA

Missouri

  • Gammon Earhart
    Washington University School of Medicine
    earhartg@wusm.wustl.edu
    Phone: (314) 286-1478
    Campus Box 8502
    4444 Forest Park Blvd.
    St. Louis, MO 63108
    USA

Utah

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