Spina Bifida and Genetics study planned for January 2012

[Margot B]

I have just signed up to participate in a study of spina bifida and genetics. The researchers are looking for saliva samples of mothers of children with spina bifida. The study starts next year. Please have a look here:

http://www.sbgenetics.org/

[Jess&Madi]

so excited 2 hear about this ... pls keep us posted!

[Amnada]

I participated in the first round.
No hassle at all to participate.

[Jess&Madi]

oooh, a fellow Canadian participated, yay!

[CourtneyB]

Hi All! I am Courtney Beyer, the Study Coordinator for the Spina Bifida Genetics Research Project! Thank you to all who already gave saliva samples in the first phase. Thank you for mentioning how easy the process is! We are opening the study in the next few weeks but in the mean time you can go to www.sbgenetics.org and sign up and when the study is open I will re-email you to let you know you can register and take the short survey. Please email me at Cbeyer@sbgenetics.org

Thanks!

[angel]

I did a similar study a few years ago. They tested me my parents and living grandparents. They said if they did find a genetic link in my family they would not notify us of the results. I believe it was done through the spina bifida research resource.

Angel

[CourtneyB]

Hi Angel,

Thank you so much for posting. I found a link to the Spina Bifida Research Resource https://sph.uth.tmc.edu/sbrr/. Is this the organization that conducted the study you were apart of? I am new to my position here and do not know about all the other SB studies. Thank you for letting me know.

The Spina Bifida Genetics Research Project www.sbgenetics.org is a different study. Similar to the previous study we need to collect a saliva sample from a child affected by spina bifida and the mother. Like the other study because of the privacy restrictions involved in medical research, we cannot provide participants with the results of their individual tests. Please let me know if you have any other questions about the study. Thanks! Courtney