Why is this study being done?

For reasons that are only partially understood, middle-aged and older adults with Down syndrome are more likely to develop Alzheimer’s Disease (AD) than other, similarly aged adults. People with AD have changes in their brains that, very slowly over time, make it difficult to remember and do things that are a part of everyday life. In AD, these changes can start in the brain many years before any problems with memory and functioning begin, but once they start, they get worse and worse as time goes on. 
The purpose of this research study is to identify those things that can predict which adults with Down syndrome are most likely to develop AD. This is very important, because it could help us develop new therapies or give us an idea of how to prevent or slow AD in adults with Down syndrome. The information we learn could also be very helpful for everyone (not just adults with Down syndrome) at risk for developing dementia. 

What is expected of me if I enter the study?

Participation in this research study is completely up to you. You can agree to do all parts of the study or just some of them. However, everyone in the study must agree to take some tests of thinking, have their study partner will answer questions about their health history, behavior, and other things they do in their daily life, and to give blood samples at each study visit. 

Who is eligible for this study?

Adults with Down syndrome who are at least 25 years old. You may already have been taking part in another research study to look at aging or AD in adults with Down syndrome, and we are asking you to continue your participation. This may also be the first time you have considered volunteering for this kind of research study. Both men and women will participate in this study, but not women who are pregnant or actively trying to get pregnant. We expect around 700 adults with Down syndrome to enroll in the study along with approximately 50 brothers or sisters of some of these volunteers. 

What is brain imaging like?

Can I find out my results from the study?

Most tests done as part of this research study are different from those you would receive as part of your healthcare. There are no plans to share study results with you, your regular doctors, or your study partner. However, if the study team happens to see something, just by chance, that could possibly affect your health or well-being, we can provide that information to your regular doctor. 

Will I be paid for this study?

You will be paid for participation in this study, the amount will depend on the procedures you decide to complete. You will also be paid for any travel costs you incur from the study.

Where can I find out who to contact?