Neurodegeneration in Aging Down Syndrome (NiAD) – Siblings of Adults with Down Syndrome

STUDY BASICS

Siblings of adults with Down syndrome needed to participate in a study to help researchers learn more about the risk and development of Alzheimer’s disease and dementia in people with Down syndrome. Compensation provided.

STUDY PURPOSE

People with Down syndrome are at an increased risk of developing Alzheimer’s disease and dementia. Amyloid plaques (protein deposits that build up outside the nerve cells) found in the brains of people with Alzheimer’s disease are thought to play a significant role in the development of symptoms such as memory loss, reduced interest in being sociable, restlessness, and other changes. The gene that makes the amyloid protein is on the 21st chromosome. Because individuals with Down syndrome have an extra 21st chromosome, they may be more likely to develop amyloid plaque deposits found in Alzheimer’s disease. The purpose of this study is to help researchers assess a wide range of biomarkers for Alzheimer’s disease in a large group of adults with Down syndrome and their siblings. Biomarkers are measurable substances in the body that can indicate the presence of a condition or disease.

COULD THIS STUDY BE RIGHT FOR YOU?

• Ages 25 and up
• Biological full sibling of a person with Down syndrome
• Your sibling with Down syndrome (age 25 and up) is also already enrolled in the study or would like to be enrolled in the study

WHAT PARTICIPANTS CAN EXPECT

Participation involves four visits over four years. Each visit takes approximately 2 days to complete. Participants will complete questionnaires and evaluations, have blood drawn, and have MRI and PET scans of the brain. Sibling participants can either join the sibling with Down syndrome for research visits or arrange separate visits at their convenience. Participants will be compensated up to $900.00 for completing all visits and procedures. Funds are available for participants and caregivers who reside a distance from Pittsburgh to stay overnight.