What is the purpose of this study?
Cincinnati Children’s Hospital Medical Center is conducting a research study, sometimes known as a clinical trial or clinical study, to collect information for the Jane and Richard Thomas Center for Down Syndrome, to be used to help improve healthcare for people with Down Syndrome, to stimulate interest in research within this population, and to identify potential participants for future research studies.
Who will be included in this study?
Children and adults of all ages with Down syndrome may be eligible to participate.
What is involved?
The study lasts for as long as you decide to participate and does not require any visits to Cincinnati Children’s. . The following is a list of procedures that will take place during the study:
• At enrollment you will be given the choice if you would/would not like to be contacted about future research projects
• You will be asked to provide information to the study team so a complete medical history can be recorded
• You will be asked to provide an update once a year when contacted by the study team.
What are the benefits?
You may receive no direct benefit from participating in this study. The greatest benefit is that you may be contributing to research that helps other people with Down syndrome. Research studies are essential in finding new and improved treatments and diagnostic tools.
Will I get all the facts about the study?
People interested in participating will be given a consent form that thoroughly explains all of the details of the study. The form covers all of the procedures, the risks, the benefits, the pay, who to contact with questions or concerns and more. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered. Study procedures will not begin until the subject or their parent or guardian has signed this form and, if of age, the child has given at minimum his/her verbal agreement.
What are the risks?
There is a slight risk of confidentiality associated with participation. Every effort will be taken to ensure that your information remains private and confidential.
What is the pay?
Although there is no monetary compensation for participation, you may be contributing to research that helps other people with Down syndrome.
Who should I contact for more information?
Stephanie Hotze
Cincinnati Children’s Hospital Medical Center
The Jane and Richard Thomas Center for Down Syndrome
3333 Burnet Ave., Cincinnati, OH 45229-3039
Phone: 513-636-3881
stephanie.hotze@cchmc.org
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