NCT01629043

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.

Trial Health

90
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
13,000

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Jul 2009

Longer than P75 for all trials

Geographic Reach
4 countries

24 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

July 1, 2009

Completed
3 years until next milestone

First Submitted

Initial submission to the registry

June 25, 2012

Completed
2 days until next milestone

First Posted

Study publicly available on registry

June 27, 2012

Completed
10.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 1, 2022

Completed
10 months until next milestone

Study Completion

Last participant's last visit for all outcomes

July 1, 2023

Completed
Last Updated

July 14, 2023

Status Verified

July 1, 2023

Enrollment Period

13.2 years

First QC Date

June 25, 2012

Last Update Submit

July 12, 2023

Conditions

Keywords

Parkinson'sQuality of CareImprovementMobilityCognitionCaregiver burdenCenter difference

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodProbability 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.

You may qualify if:

  • Patients diagnosed with idiopathic Parkinson's disease receiving medical care for the diagnosis of idiopathic Parkinson's disease at any of the participating Centers.

You may not qualify if:

  • Patients who are not willing or won't be able to give written informed consent.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (24)

Barrow Neurological Institute - Muhammad Ali Parkinson Center

Phoenix, Arizona, 85013, United States

Location

Parkinson's Institute and Clinical Center

Sunnyvale, California, 94085, United States

Location

Georgetown University Hospital

Washington D.C., District of Columbia, 20007, United States

Location

University of Florida Parkinson's Disease and Movement Disorders Center

Gainesville, Florida, 32611, United States

Location

University of Miami Parkinson's Disease and Movement Disorders Center

Miami, Florida, 33136, United States

Location

University of South Florida

Tampa, Florida, 33613, United States

Location

Augusta University

Augusta, Georgia, 30912, United States

Location

Northwestern University Parkinson's Disease and Movement Disorders Center

Chicago, Illinois, 60611, United States

Location

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

Kansas City, Kansas, 66160, United States

Location

Johns Hopkins Parkinson's Disease and Movement Disorder Center

Baltimore, Maryland, 21287, United States

Location

Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center

Boston, Massachusetts, 02114, United States

Location

Struthers Parkinson Center

Golden Valley, Minnesota, 55427, United States

Location

NYU Langone Medical Center

New York, New York, 10016, United States

Location

Mount Sinai School of Medicine Parkinson and movement Disorders Center

New York, New York, 10029, United States

Location

Oregon Health and Science University Parkinson Center

Portland, Oregon, 97239, United States

Location

University of Pennsylvania Parkinson's Disease and Movement Disorder Center

Philadelphia, Pennsylvania, 19107, United States

Location

The Vanderbilt Parkinson Disease Center

Nashville, Tennessee, 37232, United States

Location

Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic

Houston, Texas, 77030, United States

Location

University of Alberta

Edmonton, Alberta, Canada

Location

Centre for Movement Disorders

Markham, Ontario, Canada

Location

Toronto Western Hospital Movement Disorders Center

Toronto, Ontario, Canada

Location

McGill University Health Centre

Montreal, Quebec, Canada

Location

Tel Aviv Sourasky Medical Center

Tel Aviv, Israel

Location

Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center

Nijmegen, Netherlands

Location

Related 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.

    PMID: 20609611BACKGROUND

MeSH Terms

Conditions

Parkinson DiseaseCaregiver Burden

Condition Hierarchy (Ancestors)

Parkinsonian DisordersBasal Ganglia DiseasesBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesMovement DisordersSynucleinopathiesNeurodegenerative DiseasesStress, PsychologicalBehavioral SymptomsBehavior

Study Officials

  • 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

    STUDY CHAIR

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

June 25, 2012

First Posted

June 27, 2012

Study Start

July 1, 2009

Primary Completion

September 1, 2022

Study Completion

July 1, 2023

Last Updated

July 14, 2023

Record last verified: 2023-07

Locations