MIAMI & NEW YORK (September 26, 2019) — The Parkinson’s Foundation presented six new research study posters at the International Congress of Parkinson’s Disease and Movement Disorders® in Nice, France on September 22 – 26, 2019. Researchers and health professionals met to discuss the latest research, treatments and best care practices in the Parkinson’s disease (PD) field at the annual conference.
The Foundation’s PD GENEration poster, Impact of Offering Genetic Testing and Counseling to People with Parkinson’s Disease in a Clinical Setting, was chosen to be featured for a guided tour presentation to the Movement Disorder Society leadership, out of the 2,220 studies presented.
The study highlights the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease (PD GENE), a five-year, multi-center study in the U.S. that aims to offer genetic testing of seven PD-related genes along with genetic counseling to people with PD. The testing will be conducted at Parkinson’s Foundation Centers of Excellence, medical centers with a specialized team that provides expert PD care, and the Parkinson Study Group networks.
“These research studies are critical in our mission to make life better for people with Parkinson’s disease,” said John Lehr, President and CEO of the Parkinson’s Foundation. “Continually learning and tracking which Parkinson’s care and treatment options are most efficient and help ensure the best quality of life helps us to move the needle forward towards a cure.”
The second poster, Comparing Parkinson’s Disease Treatments and Outcomes in and Outside the U.S., uses data from the Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s with more than 12,000 participants in five countries. The study analyzed 7,898 people in the U.S. and 2,818 people outside of the U.S. ― all living with Parkinson’s. Researchers looked at demographics; treatment patterns; and changes over time to mobility, health related quality of life and problems associated with PD. The study found that people in the U.S. with Parkinson’s:
- Were earlier into their disease ― are less likely to be in the later stages of PD
- Had fewer comorbidities
- Were more likely to report a fall
- Visited a Center of Excellence earlier after receiving their diagnosis
- Were more likely to undergo deep brain stimulation (DBS) and seek physical therapy or occupational therapy
The Foundation’s third poster focused on mental health for people with PD, Relationships of Gender, Care Models and Neuropsychiatric Symptoms in Parkinson’s Disease. The study compared complementary health therapies across the three care models to better understand the difference between men and women living with Parkinson’s, their outcomes, management of the neuropsychiatric symptoms ― specifically depression and psychosis. The findings show the need to expand our understanding of how different care models and complementary therapies affects care and outcomes for people with PD, as well as, the need to expand our understanding on how gender affects these factors.
The fourth poster, titled Understanding the Needs and Concerns of Newly Diagnosed People with Parkinson’s disease, focused on the needs and priorities of the newly diagnosed from the perspective of people with PD and care partners. Among other key findings, the results uncovered that within the first six months of diagnosis, 42 percent of people with PD and 45 percent of care partners did not receive educational materials from their diagnosing physician. The Parkinson’s Foundation will soon launch a program to address these gaps by arming people who are newly diagnosed with the knowledge, tools and resources they need to navigate life with Parkinson’s disease (PD).
The fifth poster, Patient Organisation Collaboration to Advance Patient Engagement in Parkinson's Research, was a joint effort between the Parkinson's Foundation and Parkinson's UK. The study describes their model for international collaboration on patient engagement in designing and implementing research with industry, using their work with UCB on clinical outcomes assessment research as a case study.
The final poster presented at the congress, titled Implementing Peer-To-Peer Mentoring Program within Center of Excellence Network focused on the Foundation’s new Mentoring and Networking Program to strengthen Parkinson’s care within the Parkinson’s Foundation Centers of Excellence network. The program helps center coordinators acquire skills, gain experience and increase productivity ― all designed to help them provide expert PD care and the best engagement with team members, patients and families.
To learn more about the Parkinson’s Foundation commitment to research, visit Parkinson.org/Research.
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.