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].
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.
¿Tienes 18 años o más y vives con Espina Bífida? Los investigadores del Instituto Kennedy Krieger quieren aprender de tus experiencias.
Tus experiencias importan — especialmente cuando se trata de desarrollar las habilidades de autocuidado y la independencia que dan forma a la vida diaria. Al compartir lo que es más importante para ti, ayudarás a mejorar las experiencias de atención médica y a fortalecer los resultados para adultos con Espina Bífida en todo el país.
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.
- Research Project 1- Intravesical Probiotic for Urinary Symptoms (Indwelling) This study is for individuals with Spina Bifida who are 18 years of age or older and who live in the Washington, DC area. If you are interested in or have questions about this study, contact Margot Giannetti at [email protected] or 202-877-1071.
- 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.
Studies for families and individuals with Spina Bifida
Exploring Self-Compassion in Caregivers of Youth with Spina Bifida, University of Houston, Clear Lake
This study aims to explore the relationship between parenting stress, parenting self-
efficacy, and self-compassion in caregivers of youth with spina bifida. The study also seeks to examine the acceptability and feasibility of a self-compassion intervention for this caregiver population.
For more information and to participate in the study, email [email protected] with the subject line “SB Study”, and mention that you were referred by the Spina Bifida Association.
Family Assessment and Momentary Evaluation Pilot, Loyola University Chicago
A new pilot study is inviting families of children and teens with Spina Bifida to help researchers better understand how self‑management skills develop at home. Daily care routines can be complex, and every family approaches them in their own way. This study aims to learn how children ages 8–15 take on more responsibility over time, how parents support that process, and what makes daily care easier or more challenging.
Participating families will complete brief surveys and use a simple mobile app for a few days to share quick, real‑time check‑ins about their routines. These short snapshots offer a clearer picture of what self‑management looks like in everyday life. The pilot focuses on making sure the tools are easy to use and that the process feels manageable for families.
Insights from this small group will help refine the study protocol for a larger NIH‑funded project designed to improve resources and support for families navigating Spina Bifida care.
Contact [email protected] or 464.220.9783 for more information. Click here more about the FamilyWISE research lab.
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.
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).
- Participants may have undergone surgery shortly after birth or in utero to close the lesion.
- 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.
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 https://neurosciences.ucsd.edu/research/labs/gleeson/index.html, email them at [email protected], or call (858) 246‑0547.
Click below to see what the Gleeson Lab has already learned from families and individuals who have participated in this study.
Studies for families expecting a baby with Spina Bifida
UNC Charlotte and Hunter College
Are you pregnant and have received a diagnosis that results in eligibility for earlyintervention once your baby is born?
A research team at the University of North Carolina, Charlotte and Hunter College is conducting a study to understand the experiences and perspectives of families with a prenatal diagnosis.
You may know that families can be eligible for early intervention (EI) programs for infants and toddlers with or at risk for developmental delays or disabilities through Part C EI under IDEA, 2004. Sometimes, eligibility is because of a developmental delay. Other times, eligibility is because of a child’s diagnosis. This diagnosis makes a family eligible even if the child does not have any delays. Some of these diagnoses can be identified during pregnancy. In most states, early intervention doesn’t start until the baby is born.
The purpose of this study is to explore families’ perceptions, experiences with, and desire for EI supports after receiving a prenatal diagnosis. Information obtained from family interviews will help to inform what EI could look like during the prenatal period.
We are inviting expecting families to participate in a research study to understand your experiences and identify desired resources to meet your parenting priorities while you wait for baby to arrive.
Questions? Email [email protected].
