Questions and Answers about PD GENEration

What is genetic testing, and why is it important for Parkinson’s?

Genetic testing, which involves a simple blood draw or cheek swab, is a type of medical test that identifies changes, or variants, in genes. Some of these changes may increase the chances of developing a particular disease or predict which treatment may be more beneficial.

For people with PD, genetic testing can let us know if you carry known gene changes linked to the disease. It’s estimated that 10-15% of people with PD have a genetic form of the disease, so by better understanding how those with genetic forms of PD experience symptoms related to Parkinson’s and respond to treatment, scientists can begin to develop improved treatments and personalized medicine.

For more information about genetic testing and sequencing, visit the NIH website.

What is a bio-bank?

A bio-bank is a facility that stores biological material (such as human tissue, blood, or DNA) that may be used in scientific research.

Who can participate in PD GENEration? Are there any age restrictions?

PD GENEration is available to people with a confirmed diagnosis of Parkinson’s disease, regardless of age, through participating Centers of Excellence and Parkinson Study Group sites. To find out if your Center or site is participating, visit Parkinson.org/PDGENEration.

Can I participate in PD GENEration if I’ve already received genetic testing elsewhere?

Yes! People with PD who have already received genetic testing are encouraged to participate in PD GENEration, which may be more comprehensive than other testing experiences. 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.

If my local Center of Excellence or Parkinson Study Group site is not yet offering PD GENEration, can I still participate at another Center or site?

If you are regularly seen at a Center of Excellence or Parkinson Study Group site that is not yet offering PD GENEration, please contact us at Genetics@Parkinson.org for more information about participating.

Can I participate in PD GENEration if I’m not a patient at a Center of Excellence or Parkinson Study Group site?

Potential participants who are not seen at a Center of Excellence or Parkinson Study group site are encouraged to consult with their doctor to discuss genetic testing.

All testing results will be shared back with the participant and their clinician at the Center of Excellence or Parkinson Study Group site. It is highly encouraged that participants allow for testing results to be shared back with the referring physician.

Does it cost anything to participate in PD GENEration?

Participation in PD GENEration is completely free! In fact, PD GENEration is the first national PD study to offer free genetic testing plus counseling for Parkinson’s-related genes through clinicians at the Foundation’s Center of Excellence network and Parkinson’s Study Group sites.

Will the results of my genetic test help determine what treatment I should use?

Currently, genetic test results do not typically affect clinical treatment decision making.  The PD GENEration study is attempting to change that by helping people with Parkinson’s and their doctors get ready for the next generation of clinical trials that will target specific genetic forms of PD.  Our hope is that by increasing the understanding of the connection between Parkinson's and genetics we can help researchers understand how the disease develops and, ultimately, how it can be treated or cured. By participating and contributing your genetic data and blood sample, you have the opportunity to help scientists map the future of PD.

Will my genetic testing results ever be sent to my health insurance company or employer?

Participants’ genetic results will never be shared with third parties such as health insurance companies or employers. Testing results will be securely sent to Centers of Excellence, who will confidentially communicate results to participants.

When will researchers be able to access the data collected through PD GENEration?

We hope to make the genetic data accessible to the research community on an ongoing, regular/scheduled basis to accelerate novel scientific findings and spur new research for PD.

For more insights on this topic, listen to our podcast episode “The Launch of the PD GENEration Genetics Initiative?” and "The Background of the PD GENEration Initiative".

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