Parkinson Foundation Expands Free At-Home Genetic Testing

The Parkinson Foundation is expanding its free genetic testing initiative in an effort to connect a broader and more diverse set of candidates to clinical trials that could lead to future treatments. Its project, PD GENEration: Mapping Future of Parkinson’s Disease, now has 23 actively enrolling participant sites in addition to ongoing at-home testing, the organization said in an announcement.

Mayo Clinic explains that Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.

According to Mayo Clinic, Parkinson’s disease can’t be cured, but medications might significantly improve symptoms. The cause of Parkinson’s disease is unknown, but several factors appear to play a role, including:

Genes. Researchers have identified specific genetic mutations that can cause Parkinson’s disease. But these are uncommon except in rare cases with many family members affected by Parkinson’s disease. However, certain gene variations appear to increase the risk of Parkinson’s disease but with a relatively small risk of Parkinson’s disease for each of these genetic markers.

Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson’s disease, but the risk is relatively small.

Parkinson’s Foundation has a study called “PD GENEration: Mapping the Future of Parkinson’s Disease”. It is a national initiative that offers genetic testing for clinically relevant Parkinson’s-related genes and genetic counseling at no cost for people with Parkinson’s disease. Participation can be either in-person or at one of their participating Centers of Excellence sites or from home through a telemedicine appointment and at-home cheek swab collection kit.

For people with a confirmed diagnosis PD, the Parkinson’s Foundation provides genetic testing at no cost – the first national PD study to do so. For people with PD, genetic tests are often not available or not affordable, and not covered by health insurance. By covering the cost for people with PD, the Parkinson’s Foundation hopes to make genetic testing more accessible and empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials.

The goals of the PD GENEration study include:

Accelerate clinical trials for Parkinson’s: Clinical drug trials that target specific PD-related genes (such as LRRK2, GBA, and SNCA) can find participants and deliver results faster if more people with Parkinson’s know their genetic status.

Improve Parkinson’s care and research: PD GENEration provides clinicians and researchers with new tools and knowledge that may lead to novel therapy options for people with Parkinson’s disease. Enrollment in this initiative will allow the largest active trial for PD in the world – the Parkinson’s Outcomes Project – to link genetic status with clinical outcomes.

Empower people with Parkinson’s and their care team: Providing people with Parkinson’s disease the ability to attain their genetic data within a clinical setting will allow them to better manage their disease and potentially improve quality of life. Genetic data offer insights into disease progression and symptom severity that may potentially influence clinical care and treatment decisions.

How does PD GENEration differ from other tests? PD GENEration offers the best, most comprehensive genetic test for people with PD. Offered at no cost for people with PD in English or Spanish, the test is facilitated by a healthcare professional, and results are explained by a genetic counselor through participating Centers of Excellence and Parkinson’s Study Group sites. Further, PD GENEration pinpoints seven genetic mutations related to PD, whereas other tests are either less specific to PD, or screen for fewer variants related to the disease.

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