Parkinson's Disease Registry of the Muhammad Ali Parkinson Center

This study is ongoing, but not recruiting participants.
Sponsor:
Collaborator:
Barrow Neurological Foundation
Information provided by:
Muhammad Ali Parkinson Research Center
ClinicalTrials.gov Identifier:
NCT00217321
First received: September 15, 2005
Last updated: July 20, 2010
Last verified: September 2006
  Purpose

The purpose of the Parkinson's disease Registry is to develop a national and international database of persons with Parkinson's disease (PD). The Registry will be used to facilitate the development of new therapies and healthcare services to improve the quality of life for people with PD. It will also be a means for investigators in the field of PD to quickly identify and notify subjects about other research studies for which they are eligible.

Objectives include:

  • Assess current treatment approaches and develop best-practice guidelines
  • Track the functional abilities, access to healthcare and cost of illness of people with PD over time
  • Drive the development of innovative research projects
  • Accelerate the process of informing patients of research projects for which they may be eligible

Condition
Parkinson's Disease

Study Type: Observational
Study Design: Observational Model: Ecologic or Community
Time Perspective: Prospective
Official Title: Parkinson's Disease Registry

Resource links provided by NLM:


Further study details as provided by Muhammad Ali Parkinson Research Center:

Estimated Enrollment: 20000
Study Start Date: November 2003
Estimated Study Completion Date: December 2015
Detailed Description:

What do you need to know?

  • Any individual diagnosed with PD is eligible to enroll.
  • Participation in the registry is voluntary, confidential and free of charge.
  • Eligible participants will be notified about opportunities to participate in clinical trials, though they are under no obligation to enter.
  • Participants will need to complete an updated questionnaire every six months.
  • Participants may also be asked to complete additional surveys for PD research projects.
  • Any data provided will be used in scientific publications in summary form only.
  • Participant names will not be released to anyone outside the Parkinson's disease Registry management team without written authorization, nor will names be sold for advertising or fund-raising purposes.
  Eligibility

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

Participants must be over 18 years old, have idiopathic Parkinson's disease diagnosed by a physician.

Criteria

Inclusion Criteria:

  • Clinical diagnosis of Parkinson's disease

Exclusion Criteria:

  • No clinical diagnosis of Parkinson's disease
  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00217321

Locations
United States, Arizona
Muhammad Ali Parkinson Research Center
Phoenix, Arizona, United States, 85013
Sponsors and Collaborators
Muhammad Ali Parkinson Research Center
Barrow Neurological Foundation
Investigators
Principal Investigator: Abraham Lieberman, MD MAPC
  More Information

No publications provided

Responsible Party: Patty Hatton, CTRS/Coordinator, Barrow Neurological Institute
ClinicalTrials.gov Identifier: NCT00217321     History of Changes
Other Study ID Numbers: 03BN117
Study First Received: September 15, 2005
Last Updated: July 20, 2010
Health Authority: United States: Institutional Review Board

Keywords provided by Muhammad Ali Parkinson Research Center:
Parkinson's disease
Parkinson disease
Registry
quality of life
database

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases

ClinicalTrials.gov processed this record on April 17, 2014