Parkinson's Foundation Quality Improvement Initiative

NCT ID: NCT01629043

Last Updated: 2023-07-14

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 13000 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2009-07-31
• Study Completion Date: 2023-07-31

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."

Conditions

Parkinson's Disease

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: PROSPECTIVE

Eligibility 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.

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

National Parkinson Foundation

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Thomas Davis, MD

Role: STUDY_CHAIR

Vanderbilt University Medical Center

Adolfo Ramirez-Zamora, MD

Role: STUDY_CHAIR

University of Florida

Kelly Lyons, PhD

Role: STUDY_CHAIR

University of Kansas Medical Center

Locations

Barrow Neurological Institute - Muhammad Ali Parkinson Center

Phoenix, Arizona, United States

Parkinson's Institute and Clinical Center

Sunnyvale, California, United States

Georgetown University Hospital

Washington D.C., District of Columbia, United States

University of Florida Parkinson's Disease and Movement Disorders Center

Gainesville, Florida, United States

University of Miami Parkinson's Disease and Movement Disorders Center

Miami, Florida, United States

University of South Florida

Tampa, Florida, United States

Augusta University

Augusta, Georgia, United States

Northwestern University Parkinson's Disease and Movement Disorders Center

Chicago, Illinois, United States

University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center

Kansas City, Kansas, 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

Struthers Parkinson Center

Golden Valley, Minnesota, United States

NYU Langone Medical Center

New York, New York, United States

Mount Sinai School of Medicine Parkinson and movement Disorders Center

New York, New York, United States

Oregon Health and Science University Parkinson Center

Portland, Oregon, 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

Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic

Houston, Texas, United States

University of Alberta

Edmonton, Alberta, Canada

Centre for Movement Disorders

Markham, Ontario, Canada

Toronto Western Hospital Movement Disorders Center

Toronto, Ontario, Canada

McGill University Health Centre

Montreal, Quebec, Canada

Tel Aviv Sourasky Medical Center

Tel Aviv, , Israel

Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center

Nijmegen, , Netherlands

Countries

United States; Canada; Israel; Netherlands

References

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.

Reference Type: BACKGROUND

PMID: 20609611 (View on PubMed)

Other Identifiers

Parkinson's Foundation-QII

Identifier Type: -

Identifier Source: org_study_id