PD GENEration: Mapping the Future of Parkinson’s Disease

PD GENEration: Mapping the Future of Parkinson’s Disease, is a first-of-its-kind national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with a confirmed diagnosis of Parkinson’s disease. Participation can be either in-person at one of our participating Centers of Excellence sites or from home through a telemedicine appointment and at-home cheek swab collection kit.

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The Power of Genetic Testing

Genetic testing can be a powerful tool to uncover biological pathways that cause Parkinson’s Disease (PD), and this understanding can lead to improved treatments and care for all people with Parkinson’s. Understanding genetic differences across people with Parkinson's can help identify clues about how and why a person’s experience with the disease differs from others. 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 for PD are often not affordable and not covered by health insurance. Importantly, many genetic tests do not offer genetic counseling, which can help interpret test results. 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?

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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.

We will continue to expand the study to more Centers of Excellence and Parkinson Study Group sites across the U.S. Keep checking back for more locations as they become available.

Security and Confidentiality

Data contributed to PD GENEration will be kept anonymized and secure. DNA 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.

Stay Informed

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?” y "La representación hispana en la comunidad del Parkinson".

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