Parkinson’s Foundation expands national study, improves access to testing, counseling
The Parkinson’s Foundation has expanded its PD GENEration study, a national initiative that offers no-cost genetic testing and counseling to those with Parkinson’s disease, to 23 actively enrolling participant sites.
The study goal is to improve PD care by accelerating and supporting research to advance treatments and personalized medicine.
“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,” Roy Alcalay, MD, MS, principal investigator of the study, said in a released statement. “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.”
Currently, the study is at 23% of its goal of 15,000 participants, with enrollees located throughout all 50 United States states, Puerto Rico and the Dominican Republic. Researchers are working to expand their reach with the addition of new testing sites and by collaborating with those in historically excluded communities, which includes partnering with the Morehouse School of Medicine in Atlanta to improve accessibility for Black individuals. Study leaders also are extensively engaging with Hispanic and Latino communities and offering 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,” Chantale Branson, MD, assistant professor of neurology at Morehouse School of Medicine, said in the statement. “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.”