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Parkinson's Foundation Quality Improvement Initiative (PF-QII)

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. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT01629043
Recruitment Status : Unknown
Verified March 2019 by National Parkinson Foundation.
Recruitment status was:  Recruiting
First Posted : June 27, 2012
Last Update Posted : March 22, 2019
Sponsor:
Information provided by (Responsible Party):
National Parkinson Foundation

Study Description
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Brief Summary:
In a recent study it was found that neurologist care for Parkinson's provides a 20% reduction in nursing home placement, hip fracture, and death (Willis 2011). However, as the authors recognized, the investigators don't know what it is about expert care that delivers this benefit. The Parkinson's Foundation's Quality Improvement Initiative was designed to identify the components of great care that yield great outcomes. By capturing demographics, clinical interventions and outcomes over time from multiple centers across the U.S, Canada and internationally, the best care practices from different clinics and different healthcare systems will be analyzed.

Condition or disease
Parkinson's Disease

Detailed Description:

In a recent study it was found that neurologist care for Parkinson's provides a 20% reduction in nursing home placement, hip fracture, and death (Willis 2011). However, as the authors recognized, we don't know what it is about expert care that delivers this benefit. The Parkinson's Foundation's Quality Improvement Initiative was designed to identify the components of great care that yield great outcomes. By capturing demographics, clinical interventions and outcomes over time from multiple centers across the U.S, Canada and internationally, the best care practices for improving care, survival, and quality of life from different clinics and different healthcare systems will be analyzed.

The Parkinson's Foundation's QII contains demographic data, information about the patient's Parkinson's disease and other comorbid illness, patient assessments of Parkinson's related physical, emotional and cognitive disability and clinician tests of mobility, memory and cognition. It also includes data on the burden of the disease on caregivers. The tests and questionnaire instruments are currently in regular use in clinical practice. The intent of the registry is not to evaluate the instruments themselves but to collect essential data from previously validated tools.

Registry data will be used to study the relationship between treatment and clinical symptoms of patients with Parkinson's. It will also be used to evaluate and improve care of patients at participating Centers. Through presentation and publication of results, it is hoped that improvement will become more widespread. Important benefits provided by such a Registry may ultimately be to:

  • Determine the long term effects of Parkinson's disease and related conditions on quality of life;
  • Generate regular reports for Centers including descriptions of their Parkinson's patient populations, treatments utilized at the Center and trends in their patients' outcomes over time;
  • Describe differences in current practice across Centers in the care of Parkinson's patients;
  • Identify patients who may be candidates for participation in trials of new medications;
  • Facilitate or initiate quality improvement efforts intended to enhance survival and/or improve quality of life for Parkinson's disease patients; and
  • Publish and otherwise disseminate findings related to most effective treatments to encourage rapid adoption of "best practices."
Study Design
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Study Type : Observational
Estimated Enrollment : 20000 participants
Observational Model: Other
Time Perspective: Prospective
Official Title: Parkinson's Foundation Quality Improvement Initiative
Study Start Date : July 2009

Resource links provided by the National Library of Medicine


Groups and Cohorts
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Outcome Measures
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Eligibility Criteria
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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:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Probability Sample
Study Population
Any person who receives medical care for the diagnosis of idiopathic Parkinson's disease at any of the participating Centers is eligible to participate in the Registry. There are no limitations for participation based on age, disease severity or presence of cognitive impairments.
Criteria

Inclusion Criteria:

  • Patients diagnosed with idiopathic Parkinson's disease receiving medical care for the diagnosis of idiopathic Parkinson's disease at any of the participating Centers.

Exclusion Criteria:

Patients who are not willing or won't be able to give written informed consent.

Contacts and Locations
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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 ClinicalTrials.gov identifier (NCT number): NCT01629043


Contacts
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Contact: James Beck, PhD 1-800-473-4636 jbeck@parkinson.org
Contact: Fernando Cubillos, MD 1-800-473-4636 fcubillos@parkinson.org

Locations
Show Show 24 study locations
Sponsors and Collaborators
National Parkinson Foundation
Investigators
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Study Chair: Thomas Davis, MD Vanderbilt University Medical Center
Study Chair: Adolfo Ramirez-Zamora, MD University of Florida
Study Chair: Kelly Lyons, PhD University of Kansas Medical Center
More Information
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Publications:

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Responsible Party: National Parkinson Foundation
ClinicalTrials.gov Identifier: NCT01629043    
Other Study ID Numbers: Parkinson's Foundation-QII
First Posted: June 27, 2012    Key Record Dates
Last Update Posted: March 22, 2019
Last Verified: March 2019
Keywords provided by National Parkinson Foundation:
Parkinson's
Quality of Care
Improvement
Mobility
 Cognition
Caregiver burden
Center difference
Additional relevant MeSH terms:
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Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
 Nervous System Diseases
Movement Disorders
Synucleinopathies
Neurodegenerative Diseases