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
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.
Bladder Rehab Buzz – November 2020
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.