Parkinson's Foundation Quality Improvement Initiative

Parkinson's Disease Clinical Trial

— PF-QII  

Official title:

Parkinson's Foundation Quality Improvement Initiative

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT01629043
• Other study ID #: Parkinson's Foundation-QII
• Status: Completed
• Start date: July 2009
• Est. completion date: July 2023

Study information

• Verified date: July 2023
• Source: National Parkinson Foundation
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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 information / eligibility

• Status: Completed
• Enrollment: 13000
• Est. completion date: July 2023
• Est. primary completion date: September 2022
• Accepts healthy volunteers: No
• Gender: All
• Age group: N/A and older

Eligibility

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.

Related Conditions & MeSH terms

• Parkinson Disease
• Parkinson's Disease

Locations

Country	Name	City	State
Canada	University of Alberta	Edmonton	Alberta
Canada	Centre for Movement Disorders	Markham	Ontario
Canada	McGill University Health Centre	Montreal	Quebec
Canada	Toronto Western Hospital Movement Disorders Center	Toronto	Ontario
Israel	Tel Aviv Sourasky Medical Center	Tel Aviv
Netherlands	Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center	Nijmegen
United States	Augusta University	Augusta	Georgia
United States	Johns Hopkins Parkinson's Disease and Movement Disorder Center	Baltimore	Maryland
United States	Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center	Boston	Massachusetts
United States	Northwestern University Parkinson's Disease and Movement Disorders Center	Chicago	Illinois
United States	University of Florida Parkinson's Disease and Movement Disorders Center	Gainesville	Florida
United States	Struthers Parkinson Center	Golden Valley	Minnesota
United States	Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic	Houston	Texas
United States	University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center	Kansas City	Kansas
United States	University of Miami Parkinson's Disease and Movement Disorders Center	Miami	Florida
United States	The Vanderbilt Parkinson Disease Center	Nashville	Tennessee
United States	Mount Sinai School of Medicine Parkinson and movement Disorders Center	New York	New York
United States	NYU Langone Medical Center	New York	New York
United States	University of Pennsylvania Parkinson's Disease and Movement Disorder Center	Philadelphia	Pennsylvania
United States	Barrow Neurological Institute - Muhammad Ali Parkinson Center	Phoenix	Arizona
United States	Oregon Health and Science University Parkinson Center	Portland	Oregon
United States	Parkinson's Institute and Clinical Center	Sunnyvale	California
United States	University of South Florida	Tampa	Florida
United States	Georgetown University Hospital	Washington	District of Columbia

Sponsors (1)

Lead Sponsor	Collaborator
National Parkinson Foundation

Countries where clinical trial is conducted

United States,  Canada,  Israel,  Netherlands, 

References & Publications (1)

Okun MS, Siderowf A, Nutt JG, O'Conner GT, Bloem BR, Olmstead EM, Guttman M, Simuni T, Cheng E, Cohen EV, Parashos S, Marsh L, Malaty IA, Giladi N, Schmidt P, Oberdorf J. Piloting the NPF data-driven quality improvement initiative. Parkinsonism Relat Disord. 2010 Sep;16(8):517-21. doi: 10.1016/j.parkreldis.2010.06.005. Epub 2010 Jul 6. — View Citation