For Researchers

Impact of COVID-19 on Children, Adolescents, and Young Adults with Spina Bifida

Are you a young person with Spina Bifida OR a parent of a child with Spina Bifida? We’d love to hear from you!

Researchers at Loyola University Chicago are conducting a brief, anonymous online survey to better understand how the effects of the COVID-19 pandemic have impacted you/your family. Answers to this survey will help researchers better know how the pandemic has impacted people with Spina Bifida and figure out ways to help!

You could participate if you:

-are 15-25 years of age

-have Spina Bifida

-can answer an online survey by yourself (so your answers stay private!)

OR

-Are a parent of a child under 18 years of age who has Spina Bifida

The survey will take about 10 minutes to complete. The first 400 people who complete the survey will receive a $5 Amazon Gift Card for their time.

For more information and to take the survey (available in English and Spanish), please email: CHATSUsability@gmail.com.

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:

  1. Diagnosed with open Spina Bifida (myelomenigocele)
  2. Have a VP shunt OR underwent surgery within a few days of birth
  3. Participant and both biological parents are all willing and able to provide a saliva sample by mail (ok to have different addresses)
  4. 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.

 

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!

Teenage Sexuality Study

Division of Pediatric Urology at Riley Hospital for Children, Indiana University

If you are a teenager with Spina Bifida, you can help researchers at Riley Hospital for Children understand things about your sexuality and sexual health by taking part in an online study. The study is open to teens ages 14 to 17 only. All answers are confidential and will be kept private.

Bladder Rehabilitation Research Training Center

MedStar’s Rehabilitation Research Training Center (RRTC) are national leaders in the research field of bladder dysfunction and urinary symptoms following nervous system injury or disease. 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.
If you are interested in or have questions about this study, contact Margot Giannetti at Margot.Giannetti@medstar.net or 202-877-1071.

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

Bladder Rehab Buzz

Decision-making factors regarding pre- or post-natal Spina Bifida lesion surgery

Would you like to help researchers with The University of Cincinnati and Cincinnati Children’s Hospital? They are inviting parents of children with Spina Bifida to identify the factors that influenced their decision between having prenatal (before birth) or postnatal (after birth) surgery. They also want to identify what supports or resources expecting parents need during the time of their surgery.

This research project is being conducted by Corrie Fabelo, a genetic counseling student at The University of Cincinnati. The principal investigator of the study is Beatrix Wong, a genetic counselor at the Division of Human Genetics, Cincinnati Children’s Hospital.

The survey should take about 25 minutes to complete. The first 200 participants to complete the full survey will receive a $5 gift card! If you have any questions, please contact Corrie Fabelo at corrie.fabelo@cchmc.org.

Please click here for more information and to take the study.