Your Visit

How long will the longitudinal study run?

We hope to see study participants every 16 months for 4 years, in order to track changes that occur over time. There will be a total of 4 visits at the research site you will visit (Visit 1 - Month 0, Visit 2 - Month 16, Visit 3 - Month 32, and Visit 4 - Month 48.) Each visit will take 1-2 days. Each of the 4 visits will vary in the type of information collected, thus the amount of time spent at the research site will vary.

What is expected if I take part in the study?

Caregivers (primary person responsible for the well-being of the person with Down syndrome): Caregivers will be asked to complete questionnaires about overall behavior and adaptive functioning in daily life for the adult with DS.

DS Subject and Sibling Controls: Will be asked to be involved in a 1-2 day visit where 5 things will happen.

Day 1 will typically involve the following 2 things:

  1. Consenting and screening procedures will take place to determine if the adult with DS and the sibling is eligible for the study.
  2. Neurological assessments for the adult with DS and the sibling will take place. Tasks that would be completed would involve things such as animal naming, story recall, drawing, walking, etc.

Day 2 will typically involve the following two things:

  1. If not completed on Day 1, a MRI scan will be used to take a picture of the brain to look at the formation of tissues as well as blood flow. The MRI scan does not require any injections. Subjects will lie on a scanning bed with half of their body inside the scanner.
  2. Blood samples to study how the body works and to understand the genetic profile of each individual in our study will be taken.
  3. Two PET scans will require that we inject a small amount of radioactive substance through an IV for each scan. These scans look for plaques (Pib Pet scan) and tangles (Tau Pet scah) which may be forming within the tissues of the brain. Individuals will lie on a table while the head is in a scanner in order to take pictures of the brain.

The following link displays a video illustrating the MRI and PET imaging procedures for this study at our Pittsburgh site. However, all sites use similar procedures.

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All data collected from this study will be kept indefiniately for the use in future research and may be shared with other researchers. Data shared for research purposed will not directly identify any person who decides to participate.

Click on your study location to for specific details about your site visit.

University of Pittsburgh   Waisman Center
University of Pittsburgh   Waisman Center
Cambridge Intellectual & Developmental Disabilities Research Group    
Cambridge Intellectual & Developmental Disabilities Research Group