A $1-million grant has made it possible for the University of Miami Miller School of Medicine to be added to the PD GENEration study, a nationwide initiative seeking to increase the availability of genetic counseling for people with Parkinson’s disease in the U.S.
“We are truly grateful for the generosity shown by the Sharron and Joseph Ashby Hubert Fund of the Community Foundation of Broward to help us expand the PD GENEration program,” John L. Lehr, president and CEO of the Parkinson’s Foundation, said in a press release.
“This program will help people with PD [Parkinson’s] better understand their diagnosis while improving Parkinson’s care by accelerating and supporting research,” he added.
Amanda Kah, charitable funds services manager at the Community Foundation of Broward, said: “We are proud to fuel this vital and necessary research with a landmark grant.”
Genetic testing and counseling are often unaffordable and not covered by insurance, making them difficult for patients to access. Consequently, most patients do not know whether they carry genetic changes in Parkinson’s-related genes.
The PD GENEration study seeks to address this need by offering online and in-person genetic testing and counselling, both in English and Spanish, at no cost to patients.
More specifically, the study tests for seven genes with known association to Parkinson’s: GBA (glucocerebrosidase beta), LRRK2 (dardarin), PRKN (Parkin), PINK1 (PTEN induced putative kinase 1), PARK7 (DJ-1), VPS-35, and SNCA (alpha-synuclein).
Early results of the study have shown the feasibility of providing widespread genetic testing and counseling to Parkinson’s patients.
Now entering the PD GENEration study, the University of Miami Miller School of Medicine is a Parkinson’s Foundation Center of Excellence, led by Carlos Singer, MD, that has a specialized care team using the latest treatments and research while providing the best patient care.
Researchers will be gathering data to better understand the underlying mechanisms of the disease and will use genetic test results to support research and advance treatment candidates and personalized therapeutic approaches.
The study also aims to help patients and physicians to identify potential clinical trial participants based on their genetic results.
“I’m participating in PD GENEration because I know that the more information we can gather about Parkinson’s disease, the closer we can get to finding better treatments and ultimately, a cure,” said Rick Friedland, patient research advocate.
More information about where to find actively enrolling sites is available here.
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