People with Down syndrome and their parents are invited to participate in a study on emotional and behavioral health.


  • People with Down syndrome, aged 12 - 45

  • Parents with a child with Down syndrome who is aged 12 - 45

Do parents and children both participate?

  • Adults with Down syndrome who sign their own medical or legal documents are welcome to invite a parent or legal guardian to participate with them or they may choose to participate on their own.

  • Children under the age of 18 or adults with Down syndrome who have a legal guardian must have a parent or legal guardian participate with them.

  • If the child or adult with Down syndrome is unable to participate, a parent can participate alone.


  • Online Surveys

  • Parents and/or person with Down syndrome are asked to answer several standardized questionnaires about emotions and behaviors. Surveys take about 30 minutes to 1 hour.

Emotional and Health Interview

  • An online interview with the parent and/or person with Down syndrome about symptoms like anxiety or depression.

  • The interview takes approximately 1 hour to complete.

DNA Cheek Swab

  • The person with Down syndrome will be asked for a DNA sample using a painless cheek swab sent through the mail.

This study is closed to enrollment.

Stay tuned for the results of the study!