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The National Parkinson Foundation Announces New Findings from Largest-Ever Parkinson’s Study of 8,000 Patients Worldwide

Latest Data Point To Improve Patient Care Through Precision Treatment

MIAMI — The National Parkinson Foundation (NPF) announced today that there are now more than 8,000 people with Parkinson’s disease (PD) enrolled in its Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s disease. The study, which is in its seventh year and now includes 20 clinics in four countries, aims to identify and explain how expert care delivers better outcomes for people with PD.  New findings presented by NPF researchers this week at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin, Germany, confirm how this study is working to meet its objective of improved patient care.

In the latest analysis of the study’s data, researchers examined medication use patterns across expert PD clinics. With over 346 different combinations of the ten different classes of medication used to manage PD, half of the subjects were treated using just nine combinations. More importantly, different centers employed different approaches to medication. In other words, the very best Parkinson’s care is not systematic; it instead reflects the preferences of the neurologist as well as the patient.

“From data collected in the Parkinson’s Outcomes Project, we know that medication use patterns vary across expert Parkinson’s disease clinics,” said Peter Schmidt, PhD, Chief Mission Officer of NPF and an author on the study.  “We have the ability to establish and disseminate the first-ever standardized treatment protocol that will help inform models of precision care for Parkinson’s.”

Using the Parkinson’s Outcomes Project as a platform, NPF plans to scientifically determine the optimal strategy for managing Parkinson’s treatment and developing the first PD treatment protocol. For example, at some centers, a simpler medication regimen results in a lower incidence of falls for the person with Parkinson’s. Based on this information, NPF can update the Parkinson’s Outcomes Project dataset about medication usage across the NPF Centers of Excellence network. A standard PD treatment protocol will ensure that the best care can reach everyone living with Parkinson’s.

“What makes this project truly innovative is that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly-diagnosed to people who have lived with Parkinson’s for 20 years or more,” said Thomas Davis, MD, Director of Movement Disorders at Vanderbilt University, Study Co-Chair. “We’re working to ensure that every patient receives the best possible care, no matter where they’re seen.”

NPF’s longitudinal study evaluates the full range of factors associated with PD: medications and other treatments, motor symptoms, cognition, anxiety A feeling of nervousness, worried thoughts and physical distress. and depression A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities., and caregiver burden. Recently, NPF has published data showing that increasing physical activity to at least 2.5 hours a week slows the decline in quality of life; NPF has also issued care recommendations around depression and anxiety after finding that it was undiagnosed in the patients tracked in the study.  NPF’s Parkinson’s Outcomes Project is also known as the Quality Improvement Initiative (QII) in scientific papers.

NPF plans to enroll 10,000 people with Parkinson’s in the study at NPF Centers of Excellence across the world. The goal of the study is to continue to identify best care practices for Parkinson’s and to widely disseminate models of excellent care to benefit more patients. For more information about the study, visit www.parkinson.org/outcomes.

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