National Patient Registry Study for Children and Adults With Spina Bifida

Why are we doing this research?

Cincinnati Children’s is conducting a registry study to collect information in order to learn more about standardized care for children and adults with spina bifida so that we can improve health outcomes.

Who can participate?

Children, teens and adults with spina bifida may be eligible to participate.

Conditions

  • Adult Studies
  • Spina Bifida
  • Birth Defects
  • Disabilities - Physical
  • Disabilities - Developmental
  • Brain - Spinal Cord - Nerves
  • Urology - Kidney - Bladder

What will happen in the study?

The study staff will ask you about your or your child’s current and past medical history at your first scheduled clinic visit after agreeing to participate in the study and then ask about medical conditions, surgeries, hospitalizations, and the status of your or your child’s bladder program and mobility methods at each follow-up visit. This is the same type of information we would want to know to provide care to your child in our Center for Spina Bifida.

The information may be collected before, during, or after the clinic visit. If all of the information is not collected at your clinic visit, we may contact you by a telephone to complete collecting the information about your or your child’s medical history. We would like to see you for your already scheduled Center for Spina Bifida clinic visit at least once a year.

The data will be stored at Cincinnati Children’s and may be used for local research with your consent.

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?

Being in this study may or may not help you or your child right now. When we complete this study, we hope that we will know more about how to better care for patients with spina bifida. This may help you or your child and other children with spina bifida in the future.

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

There are no known risks to participating in this study. There could be possible accidental release of information that you have provided about your medical history – but many steps have been taken to make that very unlikely to occur.

Your scheduled clinic visits may last a little longer to collect this information. No lab work will be obtained for the purpose of the study.

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

There is no payment for this study.

Contact

Contact Us.Rachael Mahr
513-517-7146
rachael.mahr@cchmc.org
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