PD GENEration: Mapping the Future of Parkinson’s Disease, is 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 confidentially sent to a secure central database for future Parkinson’s-related research.
The Power of Genetic Testing
Genetic testing can be a powerful tool to uncover key molecular mechanisms that cause PD, and this understanding can lead to improved treatments and care. Understanding genetic differences across people with Parkinson's can help uncover important clues about how and why every person’s experiences with the disease differs. Genetic testing can also help people with PD and their clinicians identify whether they may qualify for enrollment in certain clinical trials.
Helping Map the Future of Parkinson’s Disease
Currently, genetic tests are either not available or not affordable for people with PD and are not covered by health insurance or offered with genetic counseling. Therefore, most people with PD and their clinicians do not know if they carry genetic changes in important Parkinson’s-related genes. Through PD GENEration the Parkinson's Foundation aims to address this unmet need.
By contributing your genetic testing results to this flagship program, you have the opportunity to help accelerate scientific research to improve understanding of PD and potentially identify new and/or better treatment options.
Where Can I Participate?
Find an actively enrolling site near you. Other pilot sites will be announced later this year, with a goal of enrolling 600 participants that are patients at these locations in the study. The main criterion for participation is a confirmed diagnosis of PD. There are no age restrictions.
The Centers of Excellence network, designated by the Parkinson’s Foundation, comprises esteemed medical centers treating more than 145,000 people with PD in the U.S., setting the highest standards of Parkinson’s care worldwide.
After the pilot period, we hope to expand the study in 2020 to approximately 50 Centers of Excellence and Parkinson Study Group sites across the U.S., ultimately offering genetic testing and counseling to 15,000 people with PD.
Security and Confidentiality
Data contributed to PD GENEration will be kept secure and confidential by the University of Florida CTSI Data Coordinating Center, and blood samples will be stored by Fulgent Genetics. All data shared with the research community will be kept confidential to protect patient health and personal information.
Questions and Answers about PD GENEration: Mapping the Future of Parkinson’s Disease
Browse some common questions about the initiative, here.
We invite you to sign up to receive email updates about PD GENEration: Mapping the Future of Parkinson’s Disease. In the future, if you wish to stop receiving updates about this initiative you may opt out at any time.
In addition, you can email Genetics@Parkinson.org for more information.
Please note that the Parkinson’s Foundation houses all information confidentially.
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The Foundation acknowledges the leadership of the Soutter Family, whose early support accelerated planning and launch of the PD GENEration Initiative.
For more insights on this topic, listen to our podcast episode “The Launch of the PD GENEration Genetics Initiative?”, "The Background of the PDGENEration Initiative", "PDGENE: Genetic Counseling", "Genetics and PD: What do we know so far" and "How Clinical Studies Help People with PD".
Para más información sobre este tema, escuche nuestro podcast: “¿Porque son importantes las pruebas genéticas?”, "La representación hispana en la comunidad del Parkinson" y "¿Cuál es el siguiente paso? Cómo participar en las pruebas genéticas".