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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:
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Inclusion Criteria:
Exclusion Criteria:
Patients who are not willing or won't be able to give written informed consent.
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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.
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| Name | Affiliation | Role |
|---|---|---|
| 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 |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Barrow Neurological Institute - Muhammad Ali Parkinson Center | Phoenix | Arizona | 85013 | United States | ||
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 20609611 | Background | 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. |
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| Parkinson's Institute and Clinical Center |
| Sunnyvale |
| California |
| 94085 |
| United States |
| Georgetown University Hospital | Washington D.C. | District of Columbia | 20007 | United States |
| University of Florida Parkinson's Disease and Movement Disorders Center | Gainesville | Florida | 32611 | United States |
| University of Miami Parkinson's Disease and Movement Disorders Center | Miami | Florida | 33136 | United States |
| University of South Florida | Tampa | Florida | 33613 | United States |
| Augusta University | Augusta | Georgia | 30912 | United States |
| Northwestern University Parkinson's Disease and Movement Disorders Center | Chicago | Illinois | 60611 | United States |
| University of Kansas Medical Center Parkinson's Disease and Movement Disorder Center | Kansas City | Kansas | 66160 | United States |
| Johns Hopkins Parkinson's Disease and Movement Disorder Center | Baltimore | Maryland | 21287 | United States |
| Beth Israel Deaconess Medical Center Parkinson's Disease Movement Disorder Center | Boston | Massachusetts | 02114 | United States |
| Struthers Parkinson Center | Golden Valley | Minnesota | 55427 | United States |
| NYU Langone Medical Center | New York | New York | 10016 | United States |
| Mount Sinai School of Medicine Parkinson and movement Disorders Center | New York | New York | 10029 | United States |
| Oregon Health and Science University Parkinson Center | Portland | Oregon | 97239 | United States |
| University of Pennsylvania Parkinson's Disease and Movement Disorder Center | Philadelphia | Pennsylvania | 19107 | United States |
| The Vanderbilt Parkinson Disease Center | Nashville | Tennessee | 37232 | United States |
| Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic | Houston | Texas | 77030 | United States |
| University of Alberta | Edmonton | Alberta | Canada |
| Centre for Movement Disorders | Markham | Ontario | Canada |
| Toronto Western Hospital Movement Disorders Center | Toronto | Ontario | Canada |
| McGill University Health Centre | Montreal | Quebec | Canada |
| Tel Aviv Sourasky Medical Center | Tel Aviv | Israel |
| Parkinson Center Nijmegen at Radboud University Nijmegen Medical Center | Nijmegen | Netherlands |
| ID | Term |
|---|---|
| D010300 | Parkinson Disease |
| D000084802 | Caregiver Burden |
| ID | Term |
|---|---|
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |
| D013315 | Stress, Psychological |
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |
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