NEW YORK & MIAMI (May 3, 2022) — The Parkinson’s Foundation has announced the expansion of PD GENEration: Mapping the Future of Parkinson’s Disease, a first-of-its-kind national initiative offering genetic testing and counseling for people with Parkinson’s disease (PD) at no cost. The study has expanded to 23 actively enrolling participant sites – while still offering at-home testing – as part of the Foundation’s commitment to reach new populations.
The goal of PD GENEration 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 23% 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 nearly two decades, PD genetic research boomed, but testing was often done in research rather than clinical settings, and results were not shared with participants. In contrast, in PD GENEration, we aim to make testing accessible to all who live with PD, irrespective of their geographic location, primary language or any other barriers which would have previously excluded them from participating in research,” said Roy Alcalay, MD, MS, PD GENEration Principal Investigator.
PD GENEration is working to expand its reach with the addition of new testing sites and by collaborating with clinicians in historically excluded communities. This includes a partnership with Morehouse School of Medicine, aiming to make the study more accessible for Black and African American persons in Atlanta. The study also extensively engages Hispanic and Latino persons and provides genetic testing and counseling in English and Spanish.
“Increasing access to PD GENEration helps ensure that anyone living with PD can participate and have easy access to their genetic data,” said Chantale Branson, MD, Assistant Professor of Neurology at Morehouse School of Medicine. “We want to encourage community members to take part in the study while letting them know that their experiences are impacting the advancement of research and development of targeted therapies for the entire Parkinson’s community.”
To meet the broader needs of the research community, the Foundation formed the Parkinson’s Disease Gene Curation Expert Panel (GCEP), within the NIH-funded Clinical Genome (ClinGen) Resource. The Parkinson’s Disease GCEP is the first-ever genetics working group focused on neurodegenerative diseases. Under the Foundation’s leadership, the panel has convened more than 50 of the world’s leading researchers, geneticists, neurologists and genetic counselors dedicated to analyzing PD GENEration and other genetic data to build centralized resources that define clinically relevant genes linked to PD – all in hopes of accelerating breakthrough discoveries.
All work done by this panel will help to determine which genes are important for PD which, in turn, helps guide drug approvals and inform drug companies to prioritize specific genetic targets. Future work will evolve to include curation of Parkinson’s gene mutations, which will be significant given that the U.S Food and Drug Administration (FDA) has recognized ClinGen’s processes for variant interpretation. All work will be published and openly available as resources for researchers, clinicians and PD community members to promote a better understanding of the disease.