Parkinson's Foundation Quality Improvement Initiative



Status:Recruiting
Conditions:Parkinsons Disease
Therapuetic Areas:Neurology
Healthy:No
Age Range:Any
Updated:3/24/2019
Start Date:July 2009
Contact:James Beck, PhD
Email:jbeck@parkinson.org
Phone:1-800-473-4636

Use our guide to learn which trials are right for you!

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.

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."

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.
We found this trial at
19
sites
Baltimore, Maryland 21287
Principal Investigator: Kelly Mills, MD
Phone: 410-955-2954
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4202 E Fowler Ave
Tampa, Florida 33620
(813) 974-2011
Principal Investigator: Robert Hauser, MD
Phone: 813-396-0757
University of South Florida The University of South Florida is a high-impact, global research university...
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Augusta, Georgia 30912
Principal Investigator: John Morgan, MD
Phone: 706-721-4912
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Augusta, GA
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Boston, Massachusetts 02114
Principal Investigator: David Simon, MD
Phone: 617-667-9885
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Boston, MA
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Chicago, Illinois 60611
Principal Investigator: Tanya Simuni, MD
Phone: 312-503-8229
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Chicago, IL
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Edmonton, Alberta T6G 2J2
Principal Investigator: Janis Miyasaki, MD
Phone: 780-248-1797
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Edmonton,
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Gainesville, Florida 32611
Principal Investigator: Irene Malaty, MD
Phone: 352-294-5434
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Gainesville, FL
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Golden Valley, Minnesota 55427
Principal Investigator: Sotirios Parashos, MD
Phone: 952-993-5495
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Golden Valley, MN
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Houston, Texas 77030
Principal Investigator: Joseph Jankovic, MD
Phone: 713-798-3951
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Houston, TX
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Kansas City, KS
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Miami, Florida 33136
Principal Investigator: Carlos Singer, MD
Phone: 305-243-6732
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Miami, FL
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Nashville, Tennessee 37232
Principal Investigator: Thomas Davis, MD
Phone: 615-936-5517
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Nashville, TN
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New York, NY
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New York, New York 10016
Principal Investigator: David Swope, MD
Phone: 646-501-4367
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New York, NY
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Philadelphia, Pennsylvania 19107
Principal Investigator: Nabila Dahodwala, MD
Phone: 215-829-7725
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Philadelphia, PA
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Phoenix, Arizona 85013
Principal Investigator: Naomi Salins, MD
Phone: 602-406-4206
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Phoenix, AZ
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Portland, Oregon 97239
Principal Investigator: Jeff Kraakevik, MD
Phone: 503-494-7245
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Portland, OR
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Sunnyvale, California 94085
Principal Investigator: Anthony Mosley, MD
Phone: 408-542-5674
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3800 Reservoir Rd NW
Washington, District of Columbia 20007
(202) 444-2000
Principal Investigator: Fernando Pagan, MD
Phone: 202-404-1447
Georgetown University Hospital MedStar Georgetown University Hospital is a not-for-profit, acute-care teaching and research hospital...
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