Research

Participate in Research

The Spina Bifida Association is committed to identifying research gaps and facilitating support to develop evidence-based policy and clinical decisions. SBA also works to ensure that those living with Spina Bifida and their care givers are included in research studies.

We encourage you to review the following available research opportunities and participate, if possible. If you have questions each study has contact information or you can contact the Spina Bifida Association National Resource Center at [email protected] or 1-800-621-3141, x. 800.

Studies for adults with Spina Bifida

The University of Alabama at Birmingham

Are you an adult with Spina Bifida? When you were growing up, did you feel that you received enough accurate information about sexuality and sexual/reproductive health? Researchers with Children’s of Alabama invite you to take part in a study that will shed light on what adults with Spina Bifida have been taught about sexuality, and how to improve and increase their learning opportunities in the future. Click here to take the 15-20 minute survey and to learn more about the study. For more information, please contact Betsy Hopson at the University of Alabama at Birmingham, 205-638-5481

Rehabilitation Research and Training Center on Home and Community-Based Services at Shirley Ryan AbilityLab 

Researchers at the Rehabilitation Research and Training Center on Home and Community‑Based Services (HCBS) at Shirley Ryan AbilityLab are looking for people who receive HCBS to help test short surveys. These surveys are designed to see how well services support people’s needs and preferences. If you join the study, you will:

  • Have a short screening and consent call on Zoom or by phone (this part is not paid).
  • Complete two or more surveys about your HCBS. Each survey takes about 10 minutes and can be done online, on Zoom with a research assistant, or by phone. You will receive a $30 gift card for each survey you finish.
  • Take the same surveys again 2 to 9 months later. You will receive $40 for each follow‑up survey.
  • You can complete up to 6 surveys total and earn up to $200.
  • To see if you are eligible, take the quick screener: https://redcap.link/hcbsquality
  • For more information, email [email protected].

Coming soon!

Kennedy Krieger Institute, The Philip A. Keelty Center for Spina Bifida & Related Conditions

Are you 18 or older and living with Spina Bifida? Researchers with the Kennedy Krieger Institute want to learn from your experiences.

Your experiences matter — especially when it comes to building the self‑care skills and independence that shape everyday life. By sharing what’s most important to you, you’ll help improve healthcare experiences and strengthen outcomes for adults with Spina Bifida across the country.

Spina Bifida and Sexual Well-Being, Universiteit Antwerpen, Belgium 

Many people with Spina Bifida do not get enough information about how it affects their sexual well‑being. Doctors may not know which topics patients want to discuss, and these conversations can feel sensitive or hard to start.

Researchers at Universiteit Antwerpen want to change this. Their goal is to provide better information, share practical tips, and understand how Spina Bifida impacts sexual health.

You can help by completing a detailed questionnaire about your experiences, challenges, and wishes. Your answers will give researchers valuable insights that can be shared with patients and healthcare providers to improve quality of life.

The survey is anonymous and takes about 45–60 minutes. It includes personal and sensitive questions that go beyond the basics. You may skip any questions you don’t want to answer, and you can save your progress to finish later.

Click here to begin the survey.

Bladder Rehabilitation Research Training Center


MedStar’s Bladder Rehabilitation Research Training Center (RRTC) are national leaders in the research field of bladder dysfunction and urinary symptoms following nervous system injury. Located at MedStar National Rehabilitation Hospital in Washington, D.C., their team works collaboratively to investigate ways to produce positive patient outcomes. SBA is supporting the RRTC’s work by encouraging our community to look into and take part in two of their studies.

Heard the latest Bladder Buzz podcasts? Bladder Buzz podcasts cover a wide range of health and social topics related to living with and managing neurogenic bladder. They are for clinicians, scientists, non-scientists, adults, children, and many are presented in Spanish.

Studies for families and individuals with Spina Bifida

A Randomized Control Trial of Transcutaneous Tibial Nerve Stimulation for Children with Neurogenic Bladder, UT Health Houston

Researchers want to learn if electrical stimulation to the legs, called transcutaneous tibial nerve stimulation (tTNS), can improve bladder storage and continence. Researchers are inviting families of children with Spina Bifida who are ages four to 17 to take part in this study, which may take up to 8 weeks. For more information about the study, contact Jacqueline Waterson, Study Coordinator, at (713) 797-5765 or [email protected]

MOMS3 – Children’s Hospital of Philadelphia (CHOP)

Did you or someone you know participate in the first Management of Myelomeningocele Study (MOMS)? All teens and young adults who were part of the first MOMS and are now ages 15-24, on or before September 2026 — and a parent — are invited to CHOP for a two-day evaluation. There will be no cost to participate in the study or travel to CHOP. Meals and lodging will also be included.

The findings of MOMS3 will tell researchers about the  long-term outcomes of fetal surgery or postnatal repair of the closure of myelomeningocele (MMC), the most serious form of Spina Bifida. Interested or want more information? Send an email to [email protected] or call 1-800-IN-UTERO. Click here to read more about this important work.

The Spina Bifida Sequencing Consortium

The Gleeson Lab at UC San Diego is still recruiting to participate in their ongoing study to find the developmental causes of Spina Bifida and uncover new avenues for therapy. Gleeson Lab researchers invite the following individuals and families to take part in this important work:

  • You are diagnosed with Spina Bifida, or you are the parent of a child with Spina Bifida (myelomeningocele, meningocele, lipomeningocele). Participants with Spina Bifida Occulta may not take part in this study.
  • Participants with Spina Bifida can be of any age.
  • The participant with Spina Bifida and both biological parents are willing and able to send saliva samples by mail. Both parents’ participation is preferred, but enrolling with one or neither is acceptable.

To enroll in the study, simply click on this link and fill out the form. A member of the Gleeson Lab Team will contact you. If you have questions, please visit https://linktr.ee/spinabifidasequencing or contact to [email protected] or (858) 246-0547.

Genetic Investigation of Childhood Neurological Disorders, University of California, San Diego

The Gleeson Lab at UC San Diego welcomes families to join a study about Spina Bifida. By working together, we hope to learn more about why some people are born with Spina Bifida and how doctors can give better care in the future.

We are now signing up families who meet these requirements:

  • People with meningomyelocele, meningocele, lipomeningocele, or terminal myelocystocele (with or without hydrocephalus)
  • Must have a VP shunt OR had surgery within a few days after birth
  • Participant and both biological parents must be willing and able to send a saliva sample by mail (it’s ok to have different addresses)
  • Participant can be of any age.

This study asks you to answer a few easy questions about your health and to send in a saliva sample by mail. From your saliva, researchers will look at your DNA and compare it with DNA from your family.

It does not cost anything to join, and your information will stay private.

fORMULARIO CONFIDENCIAL DE INSCRIPCION
CONFIDENTIAL SIGN UP FORM

After you sign up, someone from the Gleeson Lab will contact you by phone or email. If you want more details first, you can visit their website at gleesonlab.org/spina-bifida-consortium.html, email them at [email protected], or call (858) 246‑0547.

Thank you for thinking about joining this important study!