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:
- Diagnosed with open Spina Bifida (myelomenigocele)
- 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.
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
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
- 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
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.