National Parkinson Foundation's Landmark Quality Improvement Initiative Enrolls 5,000 Parkinson's Patients

Release date: 4/23/2012

New Findings Presented at the American Academy of Neurology's 64th Annual Meeting in New Orleans

MIAMI, April 23, 2012 — The National Parkinson Foundation (NPF) announced today that there are now 5,000 people with Parkinson's enrolled in its Quality Improvement Initiative (QII), the largest-ever study of clinical care and outcomes in Parkinson's. The QII builds on a model proven to dramatically increase longevity in cardiovascular surgery and cystic fibrosis. The goal of NPF's QII is to improve care of people with Parkinson's by identifying and implementing best practices across NPF centers and beyond. At present, 20 NPF Centers of Excellence participate in the study.

"By measuring treatments and their outcomes of this comprehensive cohort, we can improve care outcomes for all patients with Parkinson's," said Eugene Nelson, DSc, MPH, Director, Population Health Measurement Program, Dartmouth Institute for Health Policy and Clinical Practice. "Thus far, QII has shown us that care practices vary at expert centers and that these differences affect people's quality of life. Using the data collected, we plan to create evidence-based recommendations for Parkinson's care that we hope will provide greater relief for patients and their families."

NPF's QII is being used across NPF Centers of Excellence to inform this guideline development. Analysis of the QII data has already identified important findings which could influence the quality of care across NPF Centers and beyond. Two studies will be presented at the American Academy of Neurology's (AAN) 64th Annual Meeting in New Orleans, April 21 to April 28, 2012.

"We know that better care can make a measurable difference in the quality of life for those living with Parkinson's disease," said Joyce Oberdorf, NPF's President and CEO. "Our ultimate goal is to create and widely disseminate models of excellent care and establish proven baselines for care to benefit every patient."

The first study presented at AAN focuses on predictors of caregiver burden in Parkinson's disease. A team of Parkinson's experts from Northwestern University, led by Drs. Odinachi Oguh and Tanya Simuni, found that not only advanced disease, but particularly the patient's mental health and cognitive problems signaled caregiver strain, as also did male gender.

In the next study, under the leadership of NPF's QII, Drs. Mark Guttman, John Nutt, Andrew Siderowf and Eugene Nelson identified associations between observations in the clinic and patient's quality of life in NPF's QII participants. For the first time, this study highlights the importance of general health on how patients experience Parkinson's. The team constructed a model to determine the importance of different clinical metrics to quality of life of Parkinson's patients.

"For the first time, this study is tracking patients with advanced disease and who have other problems like diabetes and cancer," said Andrew Siderowf, MD, Associate Professor of Neurology at the University of Pennsylvania, QII co-chairman. "We can change outcomes in Parkinson's by learning what works best across centers and teaching that to our colleagues. This is creating a new standard in how we look at quality of care for our patients."

As this collection of real-world data continues to grow, physicians will be able to use this resource to evaluate and improve therapeutic strategies within the clinical setting.

"Studies that might have taken years are being done in a month or a week by analyzing the data we have already collected," states Michael Okun, MD, NPF's Medical Director. For example, QII gives us the opportunity to study over 300 people who have lived with Parkinson's for more than 20 years, a quarter of whom have not experienced marked disease progression. Most doctors see one such patient. We can now ask: how did these people stay healthy? Can these lessons be translated into care guidelines?"

About Parkinson's Disease
Affecting an estimated one million Americans and four to six million worldwide, Parkinson's disease is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for PD, and 50,000 to 60,000 new cases are diagnosed each year in the United States alone.

About the National Parkinson Foundation
Founded in 1957, the National Parkinson Foundation's mission is to improve the quality of care for people with Parkinson's disease through research, education and outreach. NPF has funded more than $164 million in care, research and support services. For more information about NPF and the Quality Improvement Initiative, visit