Serve the Parkinson's Community.
Thank you for your interest in Vet-PD. Below are some common questions and answers about the study. Your local study team can talk to you more about study details and goals.
What is Vet-PD?
Vet-PD is a research study which aims to learn more about genetic variants linked to Parkinson's disease. It collects information to learn about causes of disease. Vet-PD is not a clinical trial. It is not testing a new therapy or treatment.
Who can be part of this study?
Vet-PD is looking for volunteers with Parkinson's disease who:
Why is this study partnering with Veterans?
Veterans as a group have differences from non-Veterans in their environmental exposures. These include chemicals or head trauma, for example. Genes may play a role in how these exposures lead to disease. This is called gene-environment interaction. Genetics research can help us learn how gene-environment interaction causes PD in Veterans. This information could lead to new treatments and strategies to stop disease.
Why is this study partnering with understudied groups?
Scientists have made important discoveries in genetic research on Parkinson's disease, but so far, these discoveries have come from research studies with participants mostly of European backgrounds. By studying a diverse group of people, scientists can learn about all the different ways genes affect people with Parkinson's disease. This can help scientists develop better treatments that work for everyone, no matter their background. Diversity in research can lead to more inclusive and equitable healthcare practices and ensures that everyone can benefit from scientific advancement.
Why is genetics research important?
Genes are passed down from parents to their children. Some gene variants may increase your risk of getting a disease. Other variants may lower that risk. Genetics research helps us learn more about gene variants and their links to disease.
Genetics also may play a role in how these exposures lead to disease. This is called gene-environment interaction. Genetics research can help us learn how gene-environment interaction affects PD in Veterans. This can help to develop better tests and new treatments for disease.
What will I be asked to do if I join this study?
The study team will review a consent form with you. It will cover the details of the study and your participation.
If you do not receive your Parkinson's care at a VA Hospital, we will ask you to sign a release of information form. This will allow a Vet-PD doctor to review your medical record and confirm your eligibility.
If you are eligible to participate, you will be asked to come to a Vet-PD Enrollment Center to complete a research visit which will take about one hour. During the visit, you will be asked questions about your health history, your demographic background, your military experience (if you are a Veteran), and your Parkinson's disease. You will be asked to give a small blood sample. A Vet-PD doctor may perform a short neurological exam.
Who is leading this research?
Vet-PD is happening at VA Hospitals around the United States. It is led by Dr. Cyrus Zabetian and his research team at the VA Hospital in Seattle. It is funded by the Michael J. Fox Foundation for Parkinson's Research.
Vet-PD is adding data to the Global Parkinson's Genetics Program. GP2 is led by the National Institutes of Health (NIH). The NIH is the U.S. government's research agency. GP2 is funded by the Aligning Science Across Parkinson's (ASAP) initiative. The Michael J. Fox Foundation for Parkinson's Research is also a partner.
What will happen to my blood or saliva?
Your blood or saliva sample will be studied by scientists for genetic variants that may be linked to Parkinson's disease. Vet-PD and GP2 share their data with scientists to look for discoveries that could lead to new treatments.
How will my privacy be protected?
We understand that you may have concerns about giving a blood or saliva sample, as well as information on your family history.
After your visit, the research team will remove data that would identify you. This includes your name, contact information, and address. That identifying information is kept separate and secure. Your blood or saliva sample will have a unique ID number.
Any request by scientists to see or use your coded information must be approved by the study team. The scientists must sign forms that say they will protect the privacy of the information. They must also respect the laws of scientific research. This does not guarantee there will be no loss of privacy. But we will do everything we can to prevent that.
The study team can talk more about these measures and your privacy.
Will I be told my genetic results?
Vet-PD is not set up to return your gene results. There are some studies that may share back information on some genes related to Parkinson's disease. You can ask your Vet-PD study team about those programs. But those connections are from studies with volunteers of European ancestry. We need studies like Vet-PD to add to our list of Parkinson's gene variants which will hopefully lead to better tests and new treatments for the disease.
Vet-PD can share updates and results from the overall study after study data have been analyzed and published in the future. We will report back on new findings and the impact of your contribution.
What are the benefits of this research?
You may help scientists learn more about Parkinson's disease. This information could lead to Parkinson's tests and treatments. Those resources might help Veterans and people who have been underrepresented in Parkinson's research thus far.
What are the risks of this research?
Taking part in any study has risks. It is important to consider those before joining.
This study involves a blood draw. Some people may experience pain or bruising.
There is also a potential risk to your privacy. The study team will remove your name and identifying information from your data and samples so they cannot be linked to you. Your information will then be stored in a secure database. Talk with the study team if you have additional questions about privacy.
Will my health insurance, employers, or others find out my genetic information?
Absolutely not. The information in this study will have no impact on your job or health insurance. No one will be told you have participated. Your personal study information will not be shared publicly.
Do I need to pay to join this study?
There is no cost to you to join this study. All tests are paid for by the research team. Your health insurance will not be charged.
Will I be compensated for joining this study?
No. Vet-PD does not compensate volunteers.
Can I leave the study?
Yes. You can leave the study at any time. Joining a research study is your choice. If you choose to leave the study, your data and blood or saliva will be destroyed, if possible. Please note, however, that if scientists have already used your data for research, that information cannot be destroyed - this includes blood or saliva samples that have already been shared with GP2. To leave the study, you will need to contact a member of the study team.