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

July 12, 2023 updated by: National Parkinson Foundation
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.

Study Overview

Status

Completed

Conditions

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 Type

Observational

Enrollment (Actual)

13000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Canada
    • Alberta
      • Edmonton, Alberta, Canada
        • University of Alberta
    • Ontario
      • Markham, Ontario, Canada
        • Centre for Movement Disorders
      • Toronto, Ontario, Canada
        • Toronto Western Hospital Movement Disorders Center
    • Quebec
      • Montreal, Quebec, Canada
        • McGill University Health Centre
  • Israel
      • Tel Aviv, Israel
        • Tel Aviv Sourasky Medical Center
  • Netherlands
      • Nijmegen, Netherlands
        • Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center
  • United States
    • Arizona
      • Phoenix, Arizona, United States, 85013
        • Barrow Neurological Institute - Muhammad Ali Parkinson Center
    • California
      • Sunnyvale, California, United States, 94085
        • Parkinson's Institute and Clinical Center
    • District of Columbia
      • Washington, District of Columbia, United States, 20007
        • Georgetown University Hospital
    • Florida
      • Gainesville, Florida, United States, 32611
        • University of Florida Parkinson's Disease and Movement Disorders Center
      • Miami, Florida, United States, 33136
        • University of Miami Parkinson's Disease and Movement Disorders Center
      • Tampa, Florida, United States, 33613
        • University of South Florida
    • Georgia
      • Augusta, Georgia, United States, 30912
        • Augusta University
    • Illinois
      • Chicago, Illinois, United States, 60611
        • Northwestern University Parkinson's Disease and Movement Disorders Center
    • Kansas
      • Kansas City, Kansas, United States, 66160
        • University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center
    • Maryland
      • Baltimore, Maryland, United States, 21287
        • Johns Hopkins Parkinson's Disease and Movement Disorder Center
    • Massachusetts
      • Boston, Massachusetts, United States, 02114
        • Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center
    • Minnesota
      • Golden Valley, Minnesota, United States, 55427
        • Struthers Parkinson Center
    • New York
      • New York, New York, United States, 10016
        • NYU Langone Medical Center
      • New York, New York, United States, 10029
        • Mount Sinai School of Medicine Parkinson and movement Disorders Center
    • Oregon
      • Portland, Oregon, United States, 97239
        • Oregon Health and Science University Parkinson Center
    • Pennsylvania
      • Philadelphia, Pennsylvania, United States, 19107
        • University of Pennsylvania Parkinson's Disease and Movement Disorder Center
    • Tennessee
      • Nashville, Tennessee, United States, 37232
        • The Vanderbilt Parkinson Disease Center
    • Texas
      • Houston, Texas, United States, 77030
        • Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

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.

Description

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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Other
  • Time Perspectives: Prospective

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

National Parkinson Foundation

Investigators

  • 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

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

July 1, 2009

Primary Completion (Actual)

September 1, 2022

Study Completion (Actual)

July 1, 2023

Study Registration Dates

First Submitted

June 25, 2012

First Submitted That Met QC Criteria

June 26, 2012

First Posted (Estimated)

June 27, 2012

Study Record Updates

Last Update Posted (Actual)

July 14, 2023

Last Update Submitted That Met QC Criteria

July 12, 2023

Last Verified

July 1, 2023

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • Parkinson's Foundation-QII

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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