Parkinson's Foundation Quality Improvement Initiative
- Conditions
- Parkinson's Disease
- Registration Number
- NCT01629043
- Lead Sponsor
- National Parkinson Foundation
- 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.
- 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."
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 13000
- 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.
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (24)
Johns Hopkins Parkinson's Disease and Movement Disorder Center
🇺🇸Baltimore, Maryland, United States
Northwestern University Parkinson's Disease and Movement Disorders Center
🇺🇸Chicago, Illinois, United States
Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center
🇺🇸Boston, Massachusetts, United States
University of South Florida
🇺🇸Tampa, Florida, United States
Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic
🇺🇸Houston, Texas, United States
Barrow Neurological Institute - Muhammad Ali Parkinson Center
🇺🇸Phoenix, Arizona, United States
University of Miami Parkinson's Disease and Movement Disorders Center
🇺🇸Miami, Florida, United States
Parkinson's Institute and Clinical Center
🇺🇸Sunnyvale, California, United States
University of Florida Parkinson's Disease and Movement Disorders Center
🇺🇸Gainesville, Florida, United States
Augusta University
🇺🇸Augusta, Georgia, United States
University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center
🇺🇸Kansas City, Kansas, United States
NYU Langone Medical Center
🇺🇸New York, New York, United States
Oregon Health and Science University Parkinson Center
🇺🇸Portland, Oregon, United States
Struthers Parkinson Center
🇺🇸Golden Valley, Minnesota, United States
Mount Sinai School of Medicine Parkinson and movement Disorders Center
🇺🇸New York, New York, United States
University of Pennsylvania Parkinson's Disease and Movement Disorder Center
🇺🇸Philadelphia, Pennsylvania, United States
The Vanderbilt Parkinson Disease Center
🇺🇸Nashville, Tennessee, United States
McGill University Health Centre
🇨🇦Montreal, Quebec, Canada
Toronto Western Hospital Movement Disorders Center
🇨🇦Toronto, Ontario, Canada
University of Alberta
🇨🇦Edmonton, Alberta, Canada
Centre for Movement Disorders
🇨🇦Markham, Ontario, Canada
Tel Aviv Sourasky Medical Center
🇮🇱Tel Aviv, Israel
Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center
🇳🇱Nijmegen, Netherlands
Georgetown University Hospital
🇺🇸Washington, District of Columbia, United States