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. The following are open studies. We encourage our community to participate. 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.¡HABLAMOS ESPAÑOL!

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Vanderbilt University – Understanding and Improving Access to Section 504 Among Students with Disabilities

Little is known about how Section 504 plans benefit students with disabilities, and in particular students with Spina Bifida. Researchers with Vanderbilt University want to hear from: students ages 12 -17 who have a Section 504 plan (with their parent’s or caregiver’s consent); a parent or caregiver who has or had a child that used a Section 504 plan; and an adult with Spina Bifida who had a Section 504 plan at some point. For more information, click the survey link or contact Meghan Burke, [email protected] or 615-343-1014.

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Children’s National – Effects of CathWear Garments on the Quality of Life of Youth with Spina Bifida Who Use Overnight Urethral Catheters

Are you a child between the ages of 6 and 17 with Spina Bifida and live in the Washington, DC/Maryland/Virginia area? Researchers at Children’s National Hospital want to understand how CathWare garments, medical devices designed to secure catheters and reduce overnight drainage, can improve the quality of life in young people with Spina Bifida who perform overnight urethral catheter drainage. Interested in participating? Call their research team at 202-476-8877 for more information

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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 an 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

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

The Gleeson Lab at UC San Diego is enrolling families in a neurogenetic study of Spina Bifida. With your help, we are hopeful that we can make great progress in understanding why some people are born with Spina Bifida. We are currently enrolling participants who meet all these criteria:

  • Diagnosed with Spina Bifida – Eligibility has been extended to include not only those with meningomyelocele but now includes those with meningocele, lipomeningocele, and terminal myelocystocele, all with and without hydrocephalus.
  • Have a VP shunt OR underwent surgery within a few days of birth
  • Participant and both biological parents are all willing and able to provide a saliva sample by mail (ok to have different addresses)
  • Participant can be of any age

This study involves answering a few questions about your medical history, and providing saliva samples by mail. From the saliva samples, we will collect DNA and compare DNA sequences within your family. This study can be completed at no cost to you, and your information will be kept completely private. Learn more about the study here – https://www.youtube.com/watch?v=mqh_jEyjHl0. If you are interested in participating, please use this secure online form to initiate enrollment: https://goo.gl/forms/ipwG5B6RxNFeAshE3.

A member of the Gleeson Lab will get in touch with you by phone or email. If you would like to get more information first, you can visit our webpage (https://www.gleesonlab.org/spina-bifida-consortium.html) or contact us at [email protected] or by phone at (858) 246-0547. We thank you for your interest in taking part in this important work!

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University of Michigan – Michigan Medicine: Ability for Life Website

Researchers at University of Michigan are creating a new website called Ability for Life. The overall goal of the video-based website will be to educate adolescent girls and young women with physical disabilities about their sexual and reproductive health as well as how to generally stay healthy. There are two opportunities to participate in the development of this website:

  1. Researchers are recruiting young women with a physical disability age 10-19 and one of their parents to test the AbilityforLife.org website and provide their feedback through a recorded interview. Click here for more information. You can also send an email to [email protected]
  2. Researchers are inviting participants to take a 15-minute survey to learn what young women ages 12-26 with a physical disability – or mothers of young women ages 12-26 with a physical disability — may worry about as they or their daughters become adults. Click here for more information about the survey, send an email to [email protected]

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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.

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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.

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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.

  • Research Project 3- Connected Catheter Quality of Life Study This study is for men who are 18 years and over, and also for caregivers of someone who has a neurogenic lower urinary tract dysfunction who has previously participated in a connected catheter study. If you are interested in or have questions about this study, please contact Mandy Rounds, PhD at [email protected] or 202-877-1591

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.