What genes are you investigating for the study?
We are looking at genetic variations (Single Nucleotide Polymorphisms, or SNPs) in the genes involved in folic acid metabolism. Many published scientific studies have shown that folic acid supplementation is linked with a reduction in spina bifida and other neural tube defects. We believe that some of the risk for spina bifida and other neural tube defects are related to genetic variations in folate genes.
Will you be looking at my other genes such as the ones that are not involved with spina bifida or the folate genes?
No, we will not be looking at any other genes. We are only interested in the genes involved with spina bifida/neural tube defects and the folate genes. We will not be looking at any of your other genetic material.
Do you have ethics (IRB) approval for the study?
Yes. The study has been approved by the Institutional Review Board (IRB) of the Children’s Hospital Oakland Research Institute (CHORI).
Will insurance companies have access to my data?
No. The study is being conducted under the highest standards to protect your privacy. Once we receive your saliva sample, your name is no longer associated with the sample. The results will be aggregated, and there will be no personally identifiable information available. There is no insurance company involvement in the study, and Federal law prohibits their access to any of the personal information you provide to us.
Do participants need to pay to be in the study?
No, there is no cost to participate.
Will participants be paid?
No, study participants will not be paid. As a way of saying thank you for the time involved, we will offer participants a gift card ($10 value) or the option of making a donation to the spina bifida organization of the participant’s choice.
Who is funding the Spina Bifida Genetics Research
The study is being funded by VitaPath Genetics, Inc. (www.vpgenetics.com). VitaPath is a privately held company based in Foster City, CA.