MIAMI & NEW YORK (November 7, 2019) — The Parkinson’s Foundation today announced it has received a $250,000 Eugene Washington Engagement Award through the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the Parkinson’s Advisors in Research and Training Collaborative, a first-of-its-kind model for patient advisory boards that will engage people with Parkinson’s disease (PD) to understand their needs and priorities and advance better outcomes through comparative effectiveness research.
“This award from the PCORI Engagement Award program will help us continue our work in listening to the PD community and creating new ways for them to access better resources, care and research,” said John L. Lehr, President and Chief Executive Officer of the Parkinson’s Foundation. “We are proud to launch the Parkinson’s Advisors in Research and Training Collaborative to make life better for people with PD.”
The funding will support new patient advisory boards at five Parkinson’s Foundation Centers of Excellence across the country. The Foundation’s Centers of Excellence are medical centers with a specialized team that provide expert PD care. The program will create a patient advisory board model specific to the unique needs of the Parkinson’s community. Research staff and people living with PD will be identified and trained to co-lead the patient advisory boards which will meet quarterly to determine the needs and priorities of the PD communities they serve. During this two-year term, the Centers of Excellence will identify new research projects based on the patient advisory boards’ findings.
“I’m honored that PCORI has chosen our group for this most prestigious award,” said Patricia Davies, Parkinson’s Foundation patient advisor on the award. “By creating a template for patient advisory boards across the country, we’re ensuring that people with PD are represented in developing and leading research that meets the needs of their communities."
The Parkinson’s Foundation project was selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria.
According to Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in comparative effectiveness research and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with the Parkinson’s Foundation throughout the course of their project.”
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. This is the second PCORI grant that the Parkinson’s Foundation has received along with the Women in PD TALK program in 2017.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $400 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call (800) 4PD-INFO (473-4636).
About Parkinson’s Disease
Affecting an estimated one million Americans and 10 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 U.S. 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 Parkinson’s and 60,000 new cases are diagnosed each year in the U.S. alone.