Podcast Episode 64: The Background of the PDGENEration Initiative

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People who treat Parkinson’s disease (PD) and many people with PD know that there is not one typical form of the disease. One thing that may affect its symptoms and course is a person’s genetic make-up. The different genes that are risk factors for PD and the variations between them and even within the same gene may determine how the disease presents, progresses, and responds to treatments. With the aim of uncovering genes and mechanisms responsible for PD, the Parkinson’s Foundation initiated PD GENEration: Mapping the Future of Parkinson’s Disease, a study to look at the genes of 15,000 people with PD and correlate those findings with disease symptoms, progression, and response to treatments.

At the same time, participants in PD GENE will quickly get feedback on their genetic status that may allow them to enter clinical trials specific for the risk factors that they carry. The results will be much more comprehensive than what commercial genetic tests can provide, and it will all be free to the participants, including genetic counseling. In this podcast, neurologist and lead investigator, Dr. Roy Alcalay of Columbia University, a Parkinson’s Foundation Center of Excellence, and patient advocate Anne Hall give some background on the PD GENE genetics initiative.

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About This Episode

Released: September 24, 2019

RoyRoy N. Alcalay, MD, MS

Roy Alcalay is the Alfred and Minnie Bressler Associate Professor of Neurology at Columbia University Irving Medical Center. He obtained his medical degree from Tel Aviv University, Israel, his neurology training from the Harvard University residency program at Massachusetts General Hospital and Brigham and Women’s Hospital, and his movement disorders training at Columbia University. He earned a Master’s in biostatistics (Patient Oriented Research track) from Columbia University. His research focuses on biomarkers and genetics in Parkinson’s disease. He is the lead investigator of PD GENE, a flagship study funded by the Parkinson's Foundation providing genetic testing and counseling to people with Parkinson’s. His research is supported by the NIH, the Parkinson’s Foundation, the Michael J. Fox Foundation and the Smart Foundation. He is a member of Scientific Advisory Board (SAB) of the Silverstein Foundation for Parkinson’s with GBA and the Parkinson’s Foundation.

AnneAnne Hall, JD

Anne Hall lives with Parkinson’s disease and is a care partner of her spouse with Parkinson’s. Ms. Hall has been trained as a PF Research Advocate, is a member of the Parkinson’s Working Group, serves on FDA’s Patient Engagement Collaborative, participates in the Movement Disorder Society Task Force on genetics and PD, and is a stakeholder in the University of Colorado PD Patient and Family Advisory Council. Until 2015, Anne was a Senior Executive and Chief Counsel with DHHS. Anne regularly speaks on topics such as patient engagement in clinical trials, genetic testing, palliative care, advance care planning, disability and work, and has co-authored several research papers. Anne is a certified yoga teacher specializing in yoga for PD. 

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For all of our Substantial Matters podcast episodes, visit parkinson.org/podcast.

For more insights on this topic, listen to our podcast episodes "PDGENE: Genetic Counseling" and "Genetics and PD: What do we know so far?".
 
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