Dr. James Beck 00:00:04
Hi, I'm James Beck, the Chief Scientific Officer of the Parkinson's Foundation. Today, I'm going to answer the top questions about our PD Generations Study.
PD Generation is a national study launched by the Parkinson's Foundation in 2019. We offer genetic testing for Parkinson's-related genes and genetic counseling at no cost for participants with a confirmed Parkinson's disease diagnosis in both English and Spanish.
There are three main goals of the PD Generations Study. The first is to accelerate clinical trials for Parkinson's disease. Second is to improve Parkinson's care and research. And the third, and perhaps most important, is to empower people with Parkinson's disease and their care team to learn more about their disease.
Dr. James Beck 00:01:03
PD Generations is different from other available genetic tests because it offers the most comprehensive testing for genes related to Parkinson's disease. Offered at no cost for people with Parkinson's, the PD Generations test screens for seven genetic mutations linked to PD, while other genetic tests often only screen for a handful of mutations.
Participants of PD Generations also meet with a genetic counselor to review and discuss the test results. Those who are determined to have a genetic mutation linked to PD are then connected with relevant clinical trials for new opportunities for treatments.
Even if you've already been diagnosed with Parkinson's disease, it is worthwhile to participate in PD Generation. Currently, genetic tests are often not available, affordable or even covered by health insurance. As a result, most people with PD and their physicians do not know if they carry genetic changes in important Parkinson's-related genes.
Many clinical trials exist that are trying to fill spots with people who have a genetic mutation. Those trials need to be filled in order to make breakthroughs in treatment and care that can help all people with Parkinson's disease. PD Generation will help people get connected to these trials.
Dr. James Beck 00:02:21
We're looking for people with a Parkinson's disease diagnosis because the time is right. We believe we're at a tipping point where knowing one's genetic status is important for a person with Parkinson's.
Not only will PD Generation help empower people with a better understanding of their own disease, but PD Generation also connects people with clinical trials that are looking for participants with specific genetic forms of Parkinson's disease. If we can speed recruitment of these trials, we can directly accelerate new treatments that may slow or even stop Parkinson's disease.
If you do not have Parkinson's disease yourself, but have a family member who has been diagnosed with Parkinson's, their participation is very important.
With their support, we can drive forward clinical treatments, as well as research, to help better understand the genetics of Parkinson's disease.
PD Generation is offered through in-person participation at our Centers of Excellence and participating Parkinson’s Study Group sites. We also offer an at-home telehealth option. Anyone with a PD diagnosis can participate.
If you're interested, go to Parkinson.org/pdgeneration to learn more and to join this study.
