Clinical Trials / Research Studies
Clinical Trials / Research Studies

Down Syndrome Outcome Measures Study for Children and Teens 6 to 17 Years Old

Why are we doing this research?

Cincinnati Children's is conducting a research study to learn more about what outcome measures are best to use when evaluating treatments for children and teens with Down syndrome.

Who can participate?

Children and teens 6 to 17 years old with Down syndrome may be eligible to participate.

Conditions

  • Down Syndrome
  • Disabilities: Developmental

What will happen in the study?

This study includes 5 studies visits over the next 12 months. Here are some of the things that will happen in this study:

Your child will:

  • Complete baseline testing for IQ and language with a member of the study team.
  • Complete tests to evaluate your child’s cognitive and executive functioning. Cognitive functions include different types of memory, shifting, and processing speed. Executive functions include the ability to plan, attend, inhibit responses, and solve problems. These evaluations involve paper and pencil tasks, pointing, verbal responses, and some computerized assessments.

You, as the parent or guardian, will:

  • Complete a questionnaire regarding your and your child’s demographics, as well as your child’s current and past medical status.
  • Have a parent interview (in person or remotely) with a widely used clinical interview that looks at mental health conditions in youth and is appropriate for children and teens with an intellectual disability.
  • For each visit, be asked to complete several rating forms about your child’s adaptive skills, executive functioning, and social skills.

You 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?

We cannot promise any benefits to you or to your child from your taking part in this study. However, when we finish the study, we hope that we will know more about how to measure clinical outcomes with children with Down syndrome. This may help other children with Down syndrome in the future.

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

This study is considered to not have much risk (minimal risk). Most of the measures completed in this study are standard and commonly used in clinical evaluations.

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

Families may receive up to $500 for time and effort.

Contact

Contact Us.

Madison O’Brien
madison.obrien@cchmc.org
513-517-1375
Cincinnati Children’s Hospital Medical Center
3333 Burnet Ave.
Cincinnati, OH 45229-3039

Study Doctor

Contact Us.

Anna Esbensen, PhD
Developmental and Behavioral Pediatrics - Psychology
Cincinnati Children’s Hospital Medical Center

Deborah Fidler, PhD
Human Development and Family Studies
Colorado State University