Down Syndrome Study for Children 6 to 17 Years Old and Their Parent

Why are we doing this research?

Cincinnati Children’s is conducting an intervention study for parents of children with Down syndrome and behavioral problems to improve outcomes for the family.

Who can participate?

Children 6 to 17 years old with Down syndrome may be eligible to participate. One parent or legal guardian will also be asked to participate.

Conditions

  • Down Syndrome

What will happen in the study?

This study includes 9 visits over 20 weeks. Here are some of the things that will happen in this study:

You and your child will:

  • Wear a sleep (actigraph) watch for three separate weeks during the study.
  • Come to Cincinnati Children’s for three visits to complete questionnaires and have him/her evaluated for their cognitive and executive functioning (ability to plan, solve problems, etc.).

You will:

  • Complete short behavior diaries and sleep diaries for three separate weeks during the study.
  • Come to Cincinnati Children’s to take part in hourly educational sessions for 5 weeks.

Parents interested in having their child participate will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.

What are the good things that can happen from this research?

Families will learn more about various topics, potentially including Down syndrome, behavioral strategies, advocacy, therapies, transition planning, and the impact of behavior on children and teens with Down syndrome. Also, we hope that we can help you create a better home environment for you and your child. In addition, your participation in this study may help other children with Down syndrome and their families in the future.

What are the bad things that can happen from this research?

Your child may feel frustrated or anxious while completing the tests.

Other possible discomforts will be discussed with parents or guardians interested in learning more about the study.

Will you/your child be paid to be in this research study?

Families may receive up to $200 for time and effort, and a copy of the testing report(s) at the end of the study.

Contact

Contact Us.Emily Hoffman
513-803-3641
emily.hoffman1@cchmc.org
Division of Developmental & Behavioral Pediatrics
Cincinnati Children’s Hospital Medical Center
3333 Burnet Ave.
Cincinnati, OH 45229-3039

Study Doctor

Contact Us.Anna Esbensen, PhD
Thomas Center for Down Syndrome
Division of Developmental & Behavioral Pediatrics
Cincinnati Children’s Hospital Medical Center