## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) - [PD GENEration: Powered by the Parkinson’s Foundation](/advancing-research/our-research/pdgeneration) ## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) - [PD GENEration: Powered by the Parkinson’s Foundation](/advancing-research/our-research/pdgeneration) # Frequently Asked Questions ## 💡 Quick Summary - [PD GENEration](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") is a genetic testing and counseling initiative that helps people with Parkinson’s understand their genetic risks, contribute to research and access testing at no cost. - Learn more about study eligibility, how to participates, data privacy and how genetic results relate to [treatment](/living-with-parkinsons/treatment "Treatment"), risk and PD progression. - Explore how the study aims to advance scientific discovery and how donations support research. - How Parkinson’s disease is related to [genetic](/understanding-parkinsons/causes/genetics/understanding-genetics "Understanding Genetics") and environmental factors. ![Researchers looking at brain scan](/sites/default/files/styles/no_sizing/public/images/qanda.jpg?itok=_aYWNmP8) ## About PD GENEration - ### What is PD GENEration? [PD GENEration: Powered by the Parkinson’s Foundation](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") is a global initiative that offers genetic testing for Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s disease (PD), in English or in Spanish. - ### Who created PD GENEration? Are there any partners involved? PD GENEration is a flagship initiative of the Parkinson’s Foundation. Please see [this page](/advancing-research/our-research/pdgeneration/study-partners "PD GENEration Partners") for the our partners. - ### What are the goals? PD GENEration provides genetic testing and genetic counseling at no cost to empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials. **Specific goals include:** - **Empower people with Parkinson’s and their care team:** Providing people with Parkinson’s the ability to attain their genetic data may lead to better disease management and quality of life. Genetic data offer insights into disease progression and symptom severity that may potentially influence clinical care and treatment decisions. - **Improve Parkinson’s care and research:** PD GENEration provides clinicians and researchers with genetic knowledge that may lead to new individualized therapy options for people with Parkinson’s disease. Additionally, anonymous genetic data from PD GENEration is shared with the **[GP2 initiative](https://gp2.org/about-gp2/)** to greatly expand the global understanding of the genetics underlying PD through collaboration between scientists. - **Accelerate clinical trials for Parkinson’s:** Enrollment in clinical trials for PD if often a major hurdle for progress. PD GENEration can help industry partners by sharing information about available trials to PD GENEration participants and their clinicians. - ### How is PD GENEration different from other tests? PD GENEration offers a comprehensive genetic test for people with PD. The test is offered at no cost for people with PD, in English or Spanish, and results are explained by a genetic counselor. Further, PD GENEration can pinpoint multiple mutations related to PD in seven PD-relevant genes, whereas other tests are either less specific to PD, or screen for fewer mutations related to the disease. - ### Does PD GENEration test for more genes than the seven PD-relevant genes? PD GENEration offers optional testing for additional PD-related genes, as well as the CDC-10. The additional PD-related genes are genes that may be related to Parkinson’s disease, rare or atypical forms of Parkinson’s disease, or overlapping neurologic conditions. The CDC-10 genes are not related to Parkinson's but could be important to you and your family's health. They include variants in a limited set of health-related genes associated with specific inherited breast or colon cancer syndromes or inherited heart conditions. When enrolling in the study you can consent to be notified if you test positive for these additional PD-related and non-related genes. For a full list of the additional genes you can consent to be tested for, [visit here](/advancing-research/our-research/pdgeneration/study-resources "PD GENEration Instructions"). - ### How is it funded? PD GENEration is a flagship initiative of the Parkinson’s Foundation. Aligning Science Across Parkinson’s (ASAP), through its Global Parkinson’s Genetics Program (GP2), awarded the Parkinson’s Foundation a grant in 2024 to significantly expand PD GENEration. ASAP is a coordinated research initiative dedicated to accelerating the pace of discovery and informing the path to a cure for PD through collaboration, research-enabling resources, and data sharing. The Michael J. Fox Foundation for Parkinson’s Research is ASAP’s implementation partner and issued the grants on behalf of ASAP and GP2. Additionally, financial and in-kind support comes from the Parkinson’s community whom the Foundation represents — [industry partners](/advancing-research/our-research/pdgeneration/study-partners "PD GENEration Partners"), nonprofit organizations and people whose lives have been impacted by Parkinson's. - ### Who can participate? Are there age restrictions? PD GENEration is available to people with a confirmed diagnosis of Parkinson’s disease who are 18 and older. For questions about enrollment, email . - ### Where is it being offered? Participation can be either: - in-person at one of our participating clinical sites or - at home using a **[blood ](mailto:using%20a%20blood%20)[collection kit](/advancing-research/our-research/pdgeneration/study-resources#tasso "PD GENEration Instructions")**. For questions about enrollment, email . [Enroll Now](https://www.parkinson.org/advancing-research/our-research/pdgeneration?enroll=enable) - ### If my Parkinson’s provider is not yet offering in person enrollment, can I still participate? Yes. No matter where you receive Parkinson’s care, you can enroll at-home now. - ### Where can I find more information? If you’re interested in learning more, please contact us at or visit [Parkinson.org/PDGENEration](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation"). You can also call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636), to speak with a Helpline specialist in either English or Spanish. ## Participation & Logistics - ### What is genetic testing, and why is it important for Parkinson’s? Genetic testing, which can be performed through a blood draw in a clinic or at-home sample collection, 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 you know if you carry known gene changes linked to the disease. It’s estimated that up to 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 medicines. A deeper understanding of the genetics of PD may also lead to better treatments themselves by revealing novel therapeutic targets, spurring the development of better drugs. Genetic testing can also help people with PD and their clinicians identify whether they may qualify for enrollment in certain clinical trials. - ### How do I participate? People with PD can participate in PD GENEration in person at a participating site across the U.S., Canada, Dominican Republic, Chile, Mexico or Israel. People can also participate virtually through an at-home testing option within the U.S., Canada, Puerto Rico, and Dominican Republic. Anyone with a PD diagnosis can participate by following these steps: 1. **Choose how you want to participate:** Decide between in-person or online at-home testing. If participating at-home, click the “enroll now” button [here](https://www.parkinson.org/advancing-research/our-research/pdgeneration?enroll=enable) to begin the enrollment process. If participating in person, select your preferred site and email or call to schedule an appointment. 2. **If participating at-home using the Tasso+ kit:** - Complete the informed consent and short survey. Once completed, your at-home blood collection kit will be shipped to you using the address you provided in your survey. - Return your test kit at any UPS location. Use the original kit box with a pre-paid shipping label and return your at-home test kit at any UPS location in the U.S. and Canada or schedule a same-day UPS package pick-up. For more instructions on how to complete your at-home test kit, visit [here](/advancing-research/our-research/pdgeneration/study-resources#tasso "PD GENEration Instructions"). 4. **If in-person, attend your PD GENEration testing appointment**, where you will complete the informed consent, a short survey and sample collection with a healthcare provider. Consider having a loved one, family member or care partner assist you with the appointment. 5. **Review your results:** Attend a follow-up genetic counseling appointment, either in-person or virtual, where you will receive and review your test results with a genetic counselor. - ### How much does it cost to participate? For people with a confirmed diagnosis of PD, the Parkinson’s Foundation provides genetic testing at no cost – the first national PD study to do so. - ### Can I participate if I have 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. - ### What does it mean to be a genetic carrier of PD? A genetic carrier is someone who may carry a change associated with a disease but not display any symptoms. Children or other blood relatives of someone with a PD diagnosis may be genetic carriers of the disease. - ### Can potential genetic carriers of Parkinson’s participate? Currently, PD GENEration provides genetic testing at no cost to people who have received a Parkinson’s diagnosis. Over time and with additional funding, PD GENEration hopes to expand to offer genetic testing to others, including potential carriers. - ### How are my genetic data and sample stored? Who can access them? Your data will be stored and managed centrally at the Parkinson’s Foundation data repository. This electronic system is compliant with data privacy and security according to FDA regulatory requirements per 21 CFR Part 11. Genetic samples collected through the study will be stored by Fulgent Genetics, a Clinical Laboratory Improvement Amendments (CLIA)-accredited facility. All data shared with the research community will be without personal health information to protect patient health and personal information. - ### Will my test results impact my health insurance? **What about my children’s health insurance? 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 and/or Parkinson Study Group sites that will then confidentially communicate results to participants. - ### If my test results show a genetic change, does this mean my family members will develop PD? Over the years, scientists have studied DNA from people with PD, comparing their genes. They discovered dozens of gene changes linked to PD that are now being researched and studied for what role they play in the disease. PD is rarely hereditary (passed from generation to generation). If a person tests positive for a certain gene change associated with the disease their risk may increase, but they may never develop PD. - ### 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. PD GENEration is attempting to change that by helping people with PD and their physicians 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. - ### What does it mean If I do not test positive for any PD-related gene variants but I have family member with PD? Parkinson's is a result of a complex interaction between genes and environmental factors. Most people with Parkinson's (almost 90%) have no known genetic variant contributing to their PD. This means it is unlikely they will “pass on” a genetic risk for Parkinson’s to their children through their DNA. Family members of those with PD have an increased risk of developing Parkinson’s — about a 2% chance versus a 1% chance for those without a relative with PD. It is possible that the increased risk is from sharing similar environmental exposures to the family member with Parkinson’s. It is also possible that there remain genetic links for scientists to uncover. [Learn more about Genetics and Parkinson’s](https://www.parkinson.org/understanding-parkinsons/causes/genetics) - ### Do certain ethnic groups have a higher prevalence of Parkinson's and specific genetic variants associated with the disease? *GBA1* mutations: While *GBA1* mutations are commonly associated with PD, their prevalence varies significantly across ethnic groups. For instance, studies have shown a higher prevalence in Ashkenazi Jewish individuals (up to 20%) compared to Asian and Latin American populations (4-5%). *LRRK2* variants: Some ethnic groups, like Ashkenazi Jews and North African Berbers, have a higher prevalence of *LRRK2* variants among people with PD. These variants are a common genetic cause of PD. *SNCA* gene: Research indicates that the *SNCA* gene, which produces the alpha-synuclein protein, is associated with familial PD and has been linked to PD in people of European and East Asian descent. *PRKN* variants: Variants in the *PRKN* gene, while less common than *LRRK2* or *GBA*, are more frequent in certain ethnic groups, such as a group from Malaysia with a high rate of young-onset PD. It's important to note that while certain genetic variants may be more prevalent in some ethnic groups, they do not determine who will develop PD. Other factors, including environmental and lifestyle factors, also play a role in the development of PD. - ### What if, after participating, I decide I don’t want my data used in research? Participants can withdraw from the study and remove their bio-banked samples from the study at any time. However, all data collected up until the point of withdrawal from the study will be included in the database in a secure manner. - ### If companies or researchers profit from scientific discoveries, will study participants receive compensation? While we do not anticipate research discoveries to result in revenue, we realize it is a possibility and are looking into ways in which the community could benefit from this type of discovery. Any research agreement will explicitly address this topic and be posted to the Parkinson’s Foundation website once finalized. - ### Where can I read the study regulatory documents? [View the Informed Consent Form](/sites/default/files/documents/PDGene_Master_ICF_Jan2025.pdf "PDGene_Master_ICF_Jan2025.pdf") [View the PD GENEration Protocol](/sites/default/files/documents/PDGENE_Protocol_2024.pdf "PDGENE_Protocol_2024.pdf") ## Outcomes - ### How have you advanced research so far? How close are you to discovering a cure? An estimated one million people in the U.S. are living with PD. Through PD GENEration, we aim to identify the subset of people with PD who have genetic mutations in *GBA*, a mutation specific to Parkinson’s seen in 10% of people with PD. Once identified, we help them find enrollment in clinical studies to make breakthroughs leading to better treatment and a cure for this disease. PD GENEration data are analyzed in real-time by global researchers through Parkinson’s Foundation leadership in forming the expert panel for NIH ClinGen. So far, 12.2% of participants have been found to have a genetic form of PD. - ### How would my donation to PD GENEration be used? Your donation will be used to support the operational costs associated with implementing this national study, including but not limited to, purchasing genetic testing kits, supporting genetic counseling, and developing guidance and resources for study participants. - ### Who has access to the database of collected data and samples? The Parkinson’s Foundation is the sole owner of the data and samples, whose purpose is to help benefit research. With a vision to best serve the interests of the PD community, data and samples collected through this program will never be sold to a third party. Only approved researchers will gain access to the database, to be used for research purposes only. - ### What types of questions will researchers be able to answer using data from PD GENEration? Data from PD GENEration may help researchers answer questions such as: - How do genetics and the environment contribute to a person’s experience with PD? - Which genetic changes contribute to developing PD? - Why do some people develop PD while others do not? - How and why does each person’s experience with PD differ? - ### How can people with PD and their families benefit from participating? By enrolling in PD GENEration, each participant is learning about his or her genetic profile and if they have variants on some of the genes that have been linked to PD. All of this data informs future research on treatment options that may provide much-needed breakthroughs for PD patients and their families. - ### Can researchers access the genetic samples and data collected through PD GENEration? Yes. Anonymized, confidential data from PD GENEration is open to researchers working to develop new tools, knowledge and therapy options for people with PD. Enrollment in this flagship initiative will also allow other Parkinson’s Foundation research projects to link genetic status with clinical outcomes. Participants’ DNA and blood samples will continue to be securely stored to allow potential testing for new Parkinson’s genes discovered in the future. - ### Who will be eligible to access data collected through PD GENEration? Only researchers approved by the Parkinson’s Foundation will be eligible to access the database. All approved researchers will be required to sign a data use agreement to comply with the Parkinson’s Foundation’s terms for use, indicating that the data and samples are to be used for research purposes only. - ### When will researchers be able to access the data collected through PD GENEration? The genetic data from PD GENEration is added to the (Global Genetics Parkinson's Project) GP2 database bi-annually. Learn more about the **[GP2 initiative](https://gp2.org/about-gp2/)** here. ## About Parkinson's - ### What is Parkinson’s disease? PD is a neurodegenerative, progressive disorder that affects dopamine-producing neurons in a specific area of the brain called substantia nigra. People with PD may experience tremor, slowness of movements, gait and balance problems, and non-motor symptoms including depression, anxiety, constipation and cognitive impairment. [LEARN MORE](/understanding-parkinsons/what-is-parkinsons "What is Parkinson's?") - ### Who is affected by Parkinson’s disease? The [incidence of PD](/understanding-parkinsons/statistics/prevalence-incidence "Prevalence & Incidence") increases with age. An estimated four percent of people with PD are diagnosed before age 50, and men are 1.5 times more likely to have PD than women. - ### How many people live with Parkinson’s? Nearly one million people in the U.S. are living with PD. This number is expected to rise to 1.2 million by 2030. Parkinson's is the second-most common neurodegenerative disease after Alzheimer's disease. Nearly 90,000 people in the U.S. are diagnosed with PD each year. - ### What is the role of genetics in PD risk as compared to other factors like environmental exposures? We do not know exactly what causes Parkinson's, but scientists believe that a combination of genetic and environmental factors play a role in determining if, and when, a person may develop PD. The extent to which each factor is involved varies from person to person. Learn more about [Parkinson’s and Genetics](https://www.parkinson.org/understanding-parkinsons/causes/genetics) ## Related Blog Posts ![Marilyn Neault ](/sites/default/files/styles/500x360/public/images/parkinsonsresearch-blog.png?h=ed9ce7df&itok=5GQ_JMlg) Advancing Research ### [ The Ins and Outs of Participating in Parkinson’s Research ](/blog/research/participating-research) READ NOW ![Microscope ](/sites/default/files/styles/500x360/public/images/researchvlog-blog.png?h=ed9ce7df&itok=ohguX2ml) Advancing Research ### [ Find Out What Our Researchers Are Working on Right Now ](/blog/research/research-now) READ NOW ![neurotalk-blog-jim](/sites/default/files/styles/500x360/public/images/neurotalk-blog-jim.jpg?h=8e7b635d&itok=ppJc-Tvr) Advancing Research ### [ Neuro Talk: How Does Basic Research Get Us Closer to a Cure? ](/blog/research/basic-research) READ NOW ## Related Materials Podcasts ### [ Episode 15: Why and How to Participate in Parkinson’s Research ](/library/podcast/15) [Listen Now](/library/podcast/15) Fact Sheets ### [ Getting Involved in Research ](/library/fact-sheets/research) [Read Now](/library/fact-sheets/research) Videos & Webinars ### [ Neuro Talk: How Does Basic Parkinson’s Research Get Us Closer to a Cure? ](/library/videos/basic-research) [Watch Now](/library/videos/basic-research) ### Join the PD GENEration Today PD GENEration is an initiative that offers genetic testing and genetic counseling at no cost for people with Parkinson’s disease. [ENROLL NOW](/advancing-research/our-research/pdgeneration) ### Share Your Experience Did you participate in PD GENEration, our international genetics research study? We’d love to hear your story. [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) - Share on Facebook - Share on X - Share on LinkedIn