Will I receive my genetic test results?
Privacy restrictions involved in medical research prevent us from providing participants with the results of their individual tests. We will keep participants updated on the progress of the study. The results will be published in scientific journals, but no individual identifying information is ever released.
Can I get updates on the study?
Yes. We will update our website www.sbgenetics.org with updates. Follow us on Twitter (@sbgenetics) and become a fan on Facebook for updates and recent spina bifida news.
Will the results of the study be made available to participants?
Yes. Once we have completed the analysis of the data, we will submit the results for peer review and publication.
What happened with the results from the last study?
Over 1,000 women and their children with spina bifida provided saliva samples and were analyzed in the first phase of the Spina Bifida Genetics Research Project. We examined over 800 genetic variants in 37 folate genes. We found compelling evidence of a genetic pattern associated with an increased risk for spina bifida. Go to 'Updates From The First Study' to read more and click this link to see a poster presentation about the study. As with all genetic studies of complex conditions, our results need to be replicated in a second, new group of mothers and children with spina bifida. This second study ensures the results of the first study are valid and truly statistically significant.
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