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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

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Spina Bifida Genetics Research Project

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Enrollment Design for the Spina Bifida Genetics Research Project

Posted by Kelly Sitts on Tue, Apr 27, 2010 @ 05:05 PM
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Some of our participants had questions about the enrollment design of the study.

We are enrolling mothers of children with Spina Bifida and their children with Spina Bifida.  Until recently we were only enrolling one child; however, due to recent developments we are now accepting all children with Spina Bifida of the mother enrolled.  If you have already received your collection kits and would like to enroll an additional child, please contact us as support@sbgenetics.org. 

Many participants also wonder why we are not analyzing the father's DNA. The answer is that even though we aren't collecting saliva from the fathers, we still can analyze their DNA that was transmitted to the child.  We chose to enroll mothers rather than fathers because we need to know about the pregnancy.  As long we have DNA from mothers and their children, we will be able to determine the genetic contribution of both parents.

www.sbgenetics.org

support@sbgenetics.org

 

Comments

Hello, thanks for the info on why you didn't ask for the Father's D.N.A. My daughter Rachel died, in such cases as ours do you not need the 'Dad's spit' also?
Posted @ Tuesday, April 27, 2010 5:47 PM by Wendy Garrett
Thank you for participating in our study. 
 
There are many combinations of genes that each parent can pass to a child. Without a child's DNA, we would not know which genes a father or mother passed on. However, we designed our study to look at mother and child's DNA, therefore your sample will be useful in comparing your DNA to other mothers. 
 
A mother's diet and folic acid intake are known to play a role in the development of Spina Bifida. By focusing on mother and child's DNA, we hope to better understand this complex interaction of genes and diet. Hopefully this study will help us determine whether or not we can find the link by testing a mom's DNA. 
 
Posted @ Thursday, April 29, 2010 10:36 AM by Kelly Sitts
I am so glad that I could help with the Spina Bifida Research project. Now that they have reach the goal, they can start the research. PLease keep me updated.
Posted @ Friday, July 16, 2010 1:58 PM by T McKay
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