The Parkinson's Outcomes Project includes the study that we had been calling the NPF Quality Improvement Initiative (NPF-QII). Scientists participating in the study still refer to NPF-QII in their papers.
"What's measured improves." -- Peter Drucker
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Long used in technology, engineering, and manufacturing, measurement is the foundation for quality improvement in many consumer and industrial products--from cars to computers. In a similar way, by identifying and measuring the underlying factors and treatment responses in Parkinson's patients over the entire course of the disease we can find out what works best.
That's why, in 2009, NPF launched the first data-driven study of outcomes in Parkinson's disease: the Parkinson's Outcomes Project. This initiative, developed in partnership with our Centers of Excellence network, introduces the concept of continuous improvement to Parkinson's care. The goal is to explore the differences in current clinical practice in order to create and spread models of excellent care for best health outcomes. This is key to our mission of making sure that every patient receives the best care possible, whether they are seen by a specialist at an NPF Center of Excellence, a general neurologist or their primary care physician.
The Parkinson's Outcomes Project tracks and monitors the care over time of patients who are seen at participating NPF Centers of Excellence. Because no two people experience Parkinson's in exactly the same way, the data collected encompasses not only physician assessments, but also patient experience. Putting specialists, surgeons and researchers in communication with one another to share information in this way allows our affiliated centers to pool collective expertise and brain power to move Parkinson's care forward more rapidly.
In addition to medical management, we are exploring other factors that impact the disease. For example, recent studies have consistently found that exercise and physical therapy help improve motor symptoms. It's also been shown that speech therapy helps prevent pneumonia, and occupational therapy helps people live independently and avoid dangerous falls. That's why we are now capturing all of this data as well as referrals to allied health professionals. For the first time, this information will allow us to understand the role that comprehensive care plays in managing Parkinson's disease as well as to establish proven baselines for Parkinson's care that will help guide future research.
Since 2009, more than 6,000 men and women, ranging in age from 25 to 95, have joined the Parkinson's Outcomes Project's research study, representing more than 10,000 clinic visits. They include the largest group of people with young-onset Parkinson's ever assembled (400 people with onset before 40) and the first to study a large group of people (more than 350) who have lived with Parkinson's for more than 20 years. In 2013, NPF will continue to expand the study at Centers of Excellence across the United States and internationally.
The National Parkinson Foundation (NPF) and the Northwestern University Parkinson's Disease & Movement Disorders Center are hosting a Town Hall Meeting to share key findings from NPF's Parkinson's Outcomes Project in 6 cities across the U.S. this spring and fall. So far 3 city locations are scheduled and the other 3 are still to be scheduled on the NPF events calendar.
These cities include Chicago, IL at the Doubletree Hotel located at 300 E. Ohio St. on 4/6/13 from 9:00 am to 1:00 pm.
More Town Hall Meetings will be held in Baltimore, MD; Gainesville, FL; Portland, OR; Kansas City, MO and Boston, MA.
Although this will be a free event, registration (RSVP) is recommended as seating will be limited. For more information or to register to attend the NPF Town Hall Meetings, please visit www.parkinson.org/townhall or call the NPF Helpline at 800-473-4636.