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National Parkinson Foundation Quality Improvement Initiative (NPF-QII)

This study is currently recruiting participants. (see Contacts and Locations)
Verified May 2013 by National Parkinson Foundation
Sponsor:
Information provided by (Responsible Party):
National Parkinson Foundation
ClinicalTrials.gov Identifier:
NCT01629043
First received: June 25, 2012
Last updated: February 10, 2014
Last verified: May 2013
  Purpose

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 National Parkinson 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.


Condition
Parkinson's Disease

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: National Parkinson Foundation Quality Improvement Initiative

Resource links provided by NLM:


Further study details as provided by National Parkinson Foundation:

Estimated Enrollment: 10000
Study Start Date: July 2009
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 National Parkinson 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.

NPF-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."
  Eligibility

Genders Eligible for Study:   Both
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.

Criteria

Inclusion Criteria:

  • Patients diagnosed with idiopathic Parkinson's disease
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01629043

Contacts
Contact: Peter Schmidt, PhD 1-800-473-4636 pschmidt@parkinson.org
Contact: Fernando Cubillos, MD 1-800-473-4636 fcubillos@parkinson.org

  Hide Study Locations
Locations
United States, Arizona
Barrow Neurological Institute - Muhammad Ali Parkinson Center Recruiting
Phoenix, Arizona, United States, 85013
Contact: Patty Hatton, CTRS    602-406-4208    PATRICE.Hatton@DignityHealth.org   
Principal Investigator: Rohit Dhall, MD         
United States, California
Parkinson's Institute and Clinical Center Recruiting
Sunnyvale, California, United States, 94085
Contact: Karen Merchant, RN    408-542-5688    kmerchant@thepi.org   
Principal Investigator: Melanie Brandabur, MD         
United States, District of Columbia
Georgetown University Hospital Recruiting
Washington, District of Columbia, United States, 20007
Contact: Tamica Jackson    202-404-6941    TAJ30@georgetown.edu   
Contact: Helen Howard, RN    (202) 444-2333    hhh102@gunet.georgetown.edu   
Principal Investigator: Fernando Pagan, MD         
United States, Florida
University of Florida Parkinson's Disease and Movement Disorders Center Active, not recruiting
Gainesville, Florida, United States, 32611
University of South Florida Recruiting
Tampa, Florida, United States, 33613
Contact: Claudia S Rocha    813-396-0757    crocha1@health.usf.edu   
Contact: Patty Lowe    (813) 396-0763    plowe@health.usf.edu   
Principal Investigator: Robert Hauser, MD         
United States, Georgia
Georgia Regents University Movement Disorders Program Recruiting
Augusta, Georgia, United States, 30912
Contact: Dedi McLane    706-721-4912    dmclane@gru.edu   
Contact: Paula Jackson    706-721-4152    paujackson@gru.edu   
Principal Investigator: John Morgan, MD         
United States, Illinois
Northwestern University Parkinson's Disease and Movement Disorders Center Recruiting
Chicago, Illinois, United States, 60611
Contact: Brad Schifrien    312-503-2593    bschifri@nmff.org   
Contact: Karen Williams, CCRP    312-503-5645    k-williams8@northwestern.edu   
Principal Investigator: Tanya Simuni, MD         
United States, Kansas
University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center Active, not recruiting
Kansas City, Kansas, United States, 66160
United States, Maryland
Johns Hopkins Parkinson's Disease and Movement Disorder Center Recruiting
Baltimore, Maryland, United States, 21287
Contact: Becky Dunlop, RN    410-955-8795    rdunlop@jhmi.edu   
Contact: Bailey Vernon    410-616-2811    bvernon@jhmi.edu   
Principal Investigator: Zoltan Mari, MD         
United States, Massachusetts
Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center Recruiting
Boston, Massachusetts, United States, 02114
Contact: Althea Silver, RN, MPH    617-667-9885    asilver2@bidmc.harvard.edu   
Contact: Colin Pierce, BS    617-667-9890    cjpierce@bidmc.harvard.edu   
Principal Investigator: Daniel Tarsy, MD         
United States, Minnesota
Struthers Parkinson Center Active, not recruiting
Golden Valley, Minnesota, United States, 55427
United States, New York
Mount Sinai School of Medicine Parkinson and movement Disorders Center Terminated
New York, New York, United States, 10029
United States, Oregon
Oregon Health and Science University Parkinson Center Active, not recruiting
Portland, Oregon, United States, 97239
United States, Pennsylvania
University of Pennsylvania Parkinson's Disease and Movement Disorder Center Active, not recruiting
Philadelphia, Pennsylvania, United States, 19107
United States, Tennessee
The Vanderbilt Parkinson Disease Center Recruiting
Nashville, Tennessee, United States, 37232
Contact: Kelly Arney, MSSW    615-936-5517    kelly.b.arney@Vanderbilt.Edu   
Principal Investigator: Thomas Davis, MD         
United States, Texas
Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic Recruiting
Houston, Texas, United States, 77030
Contact: Christine Hunter, RN    713-798-3951    chunter@bcm.tmc.edu   
Principal Investigator: Joseph Jankovic, MD         
Canada, Ontario
Markham Stouffville Hospital Centre for Movement Disorders Active, not recruiting
Markham, Ontario, Canada
Toronto Western Hospital Movement Disorders Center Recruiting
Toronto, Ontario, Canada
Contact: Julie Racioppa    (416) 603-5800 ext 6422      
Principal Investigator: Connie Marras, MD         
Israel
Tel Aviv Sourasky Medical Center Recruiting
Tel Aviv, Israel
Contact: Adi Ezra    972-3 967 4912    adil@tasmc.health.gov.il   
Contact: Angel Migirov    972-3-697-4912    angelm@tlvmc.gov.il   
Principal Investigator: Tanya Gurevich, MD         
Netherlands
Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center Recruiting
Nijmegen, Netherlands
Contact: Jacqueline Deenen       Jacqueline.Deenen@radboudumc.nl   
Contact: Maarten teGroen       Maarten.teGroen@radboudumc.nl   
Principal Investigator: Bastiaan R Bloem, MD         
Sponsors and Collaborators
National Parkinson Foundation
Investigators
Study Chair: Connie Marras, MD University Health Network, Toronto
Study Chair: Mark Guttman, MD Markham Stoufville Hospital
  More Information

Publications:
Responsible Party: National Parkinson Foundation
ClinicalTrials.gov Identifier: NCT01629043     History of Changes
Other Study ID Numbers: NPF-QII
Study First Received: June 25, 2012
Last Updated: February 10, 2014
Health Authority: United States: Institutional Review Board
Canada: Ethics Review Committee
Netherlands: The Central Committee on Research Involving Human Subjects (CCMO)
Israel: Ethics Commission

Keywords provided by National Parkinson Foundation:
Parkinson's
Quality of Care
Improvement
Mobility
Cognition
Caregiver burden
Center difference

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases

ClinicalTrials.gov processed this record on July 28, 2014