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 jpanlener@sbaa.org, 1-800-621-3141, x. 800.¡HABLAMOS ESPAÑOL!
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Spina Bifida Financial Toxicity Project, Duke University
Medical care can be very expensive. The excessive costs can cause financial problems for people leading to financial stress, hardship, and worry. This can even impact one’s mental and physical health. This concept is described by the term ‘Financial Toxicity.’ Unfortunately, there is no established way to measure Financial Toxicity. While it is easy to measure dollars and cents, it is difficult to measure stress, worries, and other emotions related to medical costs. That’s why we teamed up with Duke University to create a survey that attempts to capture and quantify these costs. The survey and the data collected from the survey will be used to help us advocate for the Spina Bifida community and better support you.
There are two versions of the survey – one for adults with Spina Bifida who financially support themselves and one for care partners who support a person with Spina Bifida. To participate in the survey, click here. At the first page, you will be asked to select the response category: person with Spina Bifida OR parent/guardian of person with Spina Bifida.
If you have questions about the Financial Toxicity Project, please contact Duke University Hospital Resident, Rafael Tua-Caraccia, at rdt25@duke.edu.
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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: http://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 (http://www.gleesonlab.org/spina-bifida-consortium.html) or contact us at contact@gleesonlab.org or by phone at (858) 246-0547. We thank you for your interest in taking part in this important work!
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Teenage Sexuality Study – Division of Pediatric Urology at Riley Hospital for Children, Indiana University
Bladder Rehabilitation Research Training Center
- 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 Margot.Giannetti@medstar.net 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 Amanda.K.Rounds@medstar.net or 202-877-1591
Do you know the latest Bladder Rehab Buzz? The Bladder Rehab Buzz newsletter is brought to you by the Rehabilitation Research and Training Center (RRTC) at MedStar National Rehabilitation Hospital (NRH) in Washington, DC, in partnership with Children’s National Medical Center (CNMC) in Washington , DC, and The Institute for Rehabilitation and Research (TIRR) Memorial Hermann in Houston, Texas. The newsletter was launched in 2020, and is issued twice a year.