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: September 3, 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

  Show 21 Study Locations
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: September 3, 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 October 19, 2014