NEW YORK & SAN FRANCISCO (July 19, 2022) – Datavant, the leader in helping organizations securely connect health data, and the Parkinson’s Foundation, a national nonprofit dedicated to making life better for people living with Parkinson’s disease (PD), announced a partnership that will further build out PD patient registries and foster participation in industry-sponsored research.
“We are thrilled to partner with the Parkinson’s Foundation, which is a global leader enabling research into Parkinson’s and improving life for those living with the disease” said Travis May, Founder and President of Datavant. “Enabling novel linkages across clinical and genomics datasets will help to advance biomarker-based research into the causes and treatment of Parkinson’s disease.”
The Parkinson’s Foundation will use Datavant’s privacy-protecting technology to link multiple datasets with two key clinical studies: Parkinson’s Outcomes Project, a longitudinal, clinic-based, natural history registry with 13,000 participants living with Parkinson’s disease, and PD GENEration: Mapping the Future of Parkinson’s Disease, a first-of-its-kind national initiative that provides free genetic testing and counseling for seven PD-related genes to individuals with a confirmed diagnosis of PD. The PD GENEration study recently expanded to nearly 100 sites – while still offering at-home testing – as part of the Foundation’s commitment to reach new populations. Through Datavant, both studies will be able to share de-identified clinical data for future PD-related research.
“We hope to provide the research community with tools and a library of data that help advance Parkinson’s research, create discoveries in treatment and improve the care of people living with Parkinson’s disease,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation.
The study’s goal is to improve PD care by accelerating and supporting research to advance improved treatments and personalized medicine. The study aims to help people with PD and their physicians identify whether they qualify for enrollment in certain clinical trials based on their results. Currently at 28% of its 15,000-participant goal, the study’s participants are enrolled from all 50 U.S. states, Puerto Rico and the Dominican Republic.
For more information about the Foundation’s research strategy, 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.