Why are we doing this research?
Cincinnati Children’s is conducting a research study, sometimes known as a clinical trial or clinical study, to learn more about what outcome measures are best to use when evaluating treatments for children, teens and adults with Down syndrome.
Who can participate?
Children, teens and adults 6 to 29 years old with Down syndrome may be eligible to participate.
What will happen in the study?
This study includes 6 study visits to Cincinnati Children’s during a 1-year period. A detailed list of procedures will be provided to parents or guardians interested in knowing more about this study. Here are some of the things that will happen in this study:
You (as the parent or guardian) will:
- Be asked to complete several questionnaires about your child’s adaptive skills, executive functioning (ability to plan, solve problems, etc.) and social skills.
- Come to Cincinnati Children’s for three visits to have your daughter or son evaluated for their cognitive and executive functioning (ability to plan, solve problems, etc.).
Your child will be evaluated for their cognitive and executive functioning which will include the use of paper and pencil tasks, pointing, verbal responses and some computerized assessments.
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?
Being in this study may not help your child now. When we complete the study, we hope that we will know more about how best to measure the clinical outcomes of children and teens with Down syndrome. This might help other children with Down syndrome in the future.
As part of this research study, you will receive a brief psychological report about your child at no charge.
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 $275 for time and effort, as well as a brief psychological report about your child.