What is BLAAC PD?
BLAAC PD is a study to learn more about gene changes linked to Parkinson’s disease. It is enrolling people in the United States who identify as Black or African American.
BLAAC PD is part of the Global Parkinson’s Genetics Program (GP2). GP2 is gathering genetic information from groups with different backgrounds.
Who can be part of this study?
People who:- Are age 18 or older
- Identify as Black or African American
- Do not have a parent, sibling, or child with Parkinson's disease
Why can't parents, siblings, or children of people with Parkinson's take part?
Parents, siblings, or children of people with Parkinson's disease are not eligible for BLAAC PD. The study aims to understand the genetics of Black and African American people with Parkinson's. BLAAC PD compares that genetic data to Black and African American people with no known family connection to Parkinson's. This helps scientists learn more about gene changes in Black and African American people with and without Parkinson's. (Having a parent, sibling, or child with Parkinson's indicates a family connection to the disease. While the overall chance is low, having a family member with Parkinson's dose slightly increase your risk for the disease. This could skew the BLAAC PD data).
The Michael J. Fox Foundation's landmark study, the Parkinson's Progression Markers Initiative, is open to anyone over age 18 in the U.S.
Learn more by
clicking here.
Why is genetic research important?
Genes are passed down from parents to their children. Some gene changes may increase your risk of having a disease. Other changes may lower that risk. Genetics research helps us learn more about gene changes and their link to disease. This can help to develop better tests and new treatments for disease.
Why is this study partnering with Black and African American people?
Parkinson’s gene research has not involved many Black and African American people. BLAAC PD aims to help scientists learn more about the genes linked to Parkinson’s in these communities. This information could help develop new treatments.
What will I be asked to do if I join this study?
- Attend only one visit
- Give under one hour of your time
- Give either a blood or saliva sample
- Answer questions about your health and family history
- You may also have a brief physical exam
- You will not be given a study drug
- We will compensate you $25 for your participation
Who is leading this research?
BLAAC PD is happening at sites around the United States. GP2 is led by the National Institutes of Health (NIH). The NIH is the U.S. government’s research agency. It 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 information and my blood or saliva?
Your blood or saliva sample will be studied for gene changes. GP2 scientists will study your information to look for links to disease.
BLAAC 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 secured 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.
Will I be told about my genetic results?
BLAAC 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 BLAAC PD study team about those programs. But those connections are from studies with non-Black or African American volunteers. We need studies like BLAAC PD to add to our list of Parkinson’s genes and lead to new tests.
BLAAC PD can share updates and results from the study overall. We will report back on new findings and the impact of your contribution. Share your email address with the study team to get these updates. We will not email you for any other reason.
What are the benefits of joining this study?
You may help scientists learn more about Parkinson’s disease in Black and African American people. This information could lead to Parkinson’s tests and treatments for Black and African American people. Those resources might help people of other backgrounds too.
In addition, you will be compensated $25 for your participation.
What are the risks of joining this study?
Taking part in any study has risks. It is important to consider those before joining.
This study may involve 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, employer, 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.
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. Please note, however, that if scientists have already used your data for research, that information cannot be destroyed. To leave the study, you will need to contact a member of the study team.