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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: September 3, 2014
Last verified: May 2013

June 25, 2012
September 3, 2014
July 2009
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Complete list of historical versions of study NCT01629043 on ClinicalTrials.gov Archive Site
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National Parkinson Foundation Quality Improvement Initiative
National Parkinson Foundation Quality Improvement Initiative

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.

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."
Observational
Time Perspective: Prospective
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Probability Sample

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.

Parkinson's Disease
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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. Epub 2010 Jul 6.

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Recruiting
10000
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Inclusion Criteria:

  • Patients diagnosed with idiopathic Parkinson's disease
Both
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No
Contact: Peter Schmidt, PhD 1-800-473-4636 pschmidt@parkinson.org
Contact: Fernando Cubillos, MD 1-800-473-4636 fcubillos@parkinson.org
United States,   Canada,   Netherlands,   Israel
 
NCT01629043
NPF-QII
No
National Parkinson Foundation
National Parkinson Foundation
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Study Chair: Connie Marras, MD University Health Network, Toronto
Study Chair: Mark Guttman, MD Markham Stoufville Hospital
National Parkinson Foundation
May 2013

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP