BLAAC PD is a study to learn more about gene changes linked to Parkinson’s disease (PD) in people who are Black or African American. This information could help lead to new treatments for PD.

BLAAC PD is part of the Global Parkinson's Genetics Program (GP2). GP2 is a program by the Aligning Science Across Parkinson's (ASAP) initiative. The Michael J. Fox Foundation for Parkinson’s Research is also a partner.

The leader of BLAAC PD is Dr. Lana Chahine. She is a Parkinson's doctor at the University of Pittsburgh. Each study site has its own local leader.

We all have changes in our genes that make us who we are. Some gene changes may increase risk of having a disease. Other changes may lower that risk.

Studying genes helps scientists learn what goes wrong in the body to cause disease. That information can help develop better tests and new treatments.

BLAAC PD compares genetics of Black and African American people with and without Parkinson's. This helps scientists detect gene changes linked to Parkinson's. Family can share gene changes. That means it is harder to compare across groups.

Do you have a relative with PD and want to join a study? The Michael J. Fox Foundation's Parkinson's Progression Markers Initiative is open to anyone over age 18 in the U.S.

Most Parkinson's gene research has not involved many Black and African American people. More diversity in research can grow our understanding of the disease and lead to new treatments. 

BLAAC PD helped discover a variant on the GBA1 gene that increases Parkinson's risk among people of African descent. This is an example of why it's important to partner with people from different backgrounds.

At this time, BLAAC PD is not set up to return your gene results. However, that may change in the future.

There are some studies that share back genetic information. You can ask your BLAAC PD study team about those programs. Those results, though, are for genes linked to PD in studies with non-Black or non-African American volunteers. We need studies like BLAAC PD to add to our list of Parkinson’s genes and build 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 or read the BLAAC PD newslettrs on the resources page.

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.

You will be compensated $100 for your participation.

Taking part in any study has risks. It is important to consider those before joining.  

We ask volunteers to donate a blood sample. Some people may experience pain or bruising after donating.

There is also a small potential risk to your privacy. Read more below on our safety and privacy efforts or talk with the study team.

Your samples will be handled with care. The sample will be sent to a laboratory. Scientists will take DNA from your sample and genotype it. Genotyping is how scientists look for differences in genes. Your genetic information will go into a secure online platform. Any scientists who wish to see or use the secured BLAAC PD genetic data must be approved by the study team.

Your leftover sample will be kept frozen at the biorepository. A biorepository is a special facility that stores samples like blood or saliva at safe temperatures. BLAAC PD stores these samples so that, when discoveries are made, BLAAC PD leaders can use the samples to learn more and follow up on the discoveries. By participating in BLAAC PD, you will give your consent for your sample to be stored at the biorepository until it is used up.

Your safety and privacy are very important. The study has put measures in place to ensure that your samples, either blood or saliva, will be kept safe and secure.

Your sample and othr information you share such as family history of disease will be deidentified. This means that any personal information that could identify you like your name or email will be removed. That identifying information is kept separate and secure at your study site. Your blood or saliva sample will be assigned a unique ID number that cannot be traced back to you.

This does not guarantee there is absolutely no risk of loss of privacy. But we do everything we can to prevent that. The study team can talk more about these measures and your safety.

No. The information in this study will have no impact on your job or health insurance. No one will be told you have participated. Your name, email, and other personal information will not be shared publicly. This information will be kept separate and secure at your study site.

No. 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.

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 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 at your study site.