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
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|Condition or disease|
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 Type :||Observational|
|Estimated Enrollment :||20000 participants|
|Official Title:||Parkinson's Foundation Quality Improvement Initiative|
|Study Start Date :||July 2009|
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.
|Ages Eligible for Study:||Child, Adult, Older Adult|
|Sexes Eligible for Study:||All|
|Accepts Healthy Volunteers:||No|
|Sampling Method:||Probability Sample|
- Patients diagnosed with idiopathic Parkinson's disease receiving medical care for the diagnosis of idiopathic Parkinson's disease at any of the participating Centers.
Patients who are not willing or won't be able to give written informed consent.
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
|Contact: James Beck, PhDemail@example.com|
|Contact: Fernando Cubillos, MDfirstname.lastname@example.org|
|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|
|Responsible Party:||National Parkinson Foundation|
|Other Study ID Numbers:||
|First Posted:||June 27, 2012 Key Record Dates|
|Last Update Posted:||March 22, 2019|
|Last Verified:||March 2019|
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