Clinical Trials / Research Studies

Clinical Trials / Research Studies

Spina Bifida Study For Teens, Adults and Caregivers

Why are we doing this research?

Cincinnati Children’s is conducting a research study to learn more about the difficulties and supports that impact individuals with spina bifida who are transitioning from pediatric to adult care.

Who can participate?

Teens with spina bifida at least 14 years old, adults with spina bifida, and their caregivers may be eligible to participate.

Conditions

  • Spina Bifida
  • Disabilities: Developmental
  • Disabilities: Physical

What will happen in the study?

If you agree to participate, you will be asked to complete some basic demographic surveys online.

Parents, teens, and young adults will also be asked to complete standardized questionnaires about:

  • Their transition readiness
  • Self-management skills
  • Self-advocacy skills
  • Quality of life

We will also ask you to be part of a focus group, which is a group of people who have some experiences in common, conducted by a member of the study team. The focus group will take about 60 to 90 minutes. It will be audio-recorded. It will take place in person at a hospital or community location, or virtually on a meeting platform called Zoom.

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?

You will not have a direct benefit from participating in this study, but the knowledge we gain from this study could help us understand what is needed to better help teens and young adults with spina bifida successfully transition to adulthood.

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

Possible risks and discomforts will be discussed with those interested in learning more about the study.

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

Participants will receive up to $30 to complete surveys and take part in a 90-minute in person or virtual focus group.

Contact

Contact Us.Brittany Spicer
brittany.spicer@cchmc.org
513-803-5320
Cincinnati Children’s Hospital Medical Center
3333 Burnet Ave.
Cincinnati, OH 45229-3039

Study Doctor

Contact Us.Jason Woodward, MD, MS
Developmental & Behavioral Pediatrics
Cincinnati Children’s Hospital Medical Center