Parkinson’s Foundation Launches First-of-its-Kind Genetic Testing Study for People with Parkinson’s Disease

Jul 17, 2019 | Aging, Dementia, Parkinson's Disease

Parkinson's Disease

The Parkinson’s Foundation launched its PD GENEration: Mapping the Future of Parkinson’s Disease (PD), a first-of-its-kind national initiative that offers free genetic testing for clinically relevant Parkinson’s-related genes and free genetic counseling to help participants better understand their results.  Additionally, genetic testing results obtained through this study will be used for future research by scientists to develop improved treatments and personalized medicine for Parkinson’s disease.

Diagnosing Form of PD & Establishing a Foundation for Precision Medicine                                            

James Beck, PhD, chief scientific officer of the Parkinson’s Foundation notes “Between 10 and 15% of people with Parkinson’s have a genetic form of the disease.” He notes that “By better understanding how these people experience symptoms related to the disease and respond to treatments, scientists can begin to build the foundation for precision medicine.”

Genetic Testing: Qualifying PD Candidates for Clinical Trials

Genetic testing via PD GENEration will also help those with PD and their physicians identify whether they may qualify for enrollment in certain clinical trials based on their test results.  Today genetic tests are either not available or not affordable for the PD community; moreover tests are often not covered by health payers or offered with genetic counseling.  Consequently, most people with PD and their physicians do not know if they carry genetic mutations in the LRRK2, GBA or other clinically relevant PD genes.

The PD GENEration Study

Roy Alcalay, MD, MS, Department of Neurology, Columbia University Irving Medical Center, and lead principal investigator for PD GENEration noted “It will enable people with Parkinson’s and their providers to integrate this information into clinical decisions and into decision making regarding the future participation in clinical trials.”

The study site will include Columbia University Irvine Medical Center, a Parkinson’s Foundation Center of Excellence. Other sites will on board this summer with a goal of 600 participants in the study.  Ultimately the study sponsors will leverage the “The Centers of Excellence” network, designed by the Parkinson’s Foundation, comprising esteemed medical centers treating more than 145,000 people with PD in the United States, setting the highest standards of Parkinson’s care worldwide.

Study Expansion

After a pilot period, the Parkinson’s Foundation hopes to expand the program to approximately 50 Centers of Excellence and Parkinson Study Group sites across the U.S by 2020, ultimately offering genetic testing and genetic counseling for up to 15,000 people with PD.

Other PD GENEration Study Collaborators

Fulgent Genetics, a clinical laboratory with extensive experience in next generation genetic testing at scale, will support the national study.  They will process, analyze and store the samples associated with the program, while the University of Florida CTSI Data Coordinating Center will keep all data contributed to PD GENEration secure and confidential.

Moreover, the clinical trial operations will be managed by the University of Rochester Clinical Trials Coordination Center (CTCC), where the Parkinson’s Study Group was formed and has decades of experience in collaborating on clinical trials for Parkinson’s disease.

Lead Research/Investigator

Roy Alcalay, MD, MS, Department of Neurology, Columbia University Irving Medical Center, and lead principal investigator