How you can participate

The Emory Down Syndrome Project

Contact
Helen Smith
Email: hsmith@genetics.emory.edu
Telephone: 404-778-8477

Participating children must have Down syndrome (trisomy 21) and must be under the age of 18, and both biological mother and father must be able to participate.

Participation involves the following for each family:

• The mother participates in a telephone interview that takes about 45 minutes.
• Both parents and the child with Down syndrome donate a small blood sample. Children's blood can be collected in conjunction with a medically necessary blood draw.
• If your child has brothers or sisters, we may ask them to donate a saliva sample by spitting in a plastic container that we provide.
• We may ask to contact your child's biological grandparents. Grandparents are asked to provide either a saliva sample or a cheek cell sample. Grandparents are free to refuse to participate.
• We ask parents for permission to obtain their child's medical records to check for any of the medical problems often seen in individuals with Down syndrome.

• Down syndrome
• a complete atrioventricular septal defect (or AV Canal) OR a structurally normal heart (PFO or PDA ok)
• child must be under the age of 18

• We ask parents for permission to obtain their child's medical records to check for any of the medical problems often seen in individuals with Down syndrome.
• We interview the mother by telephone. The interview takes about 45 minutes.
• We interview the father by telephone. The interview takes about 15 minutes.
• Parents are asked to donate a saliva sample and a small blood sample is collected from the child with Down syndrome.