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Spina Bifida Genetics Research

Spina Bifida Genetics Research Project seeks participants for research

SB Genetics are currently seeking mothers of children with Spina Bifida to participate in their genetic study. SB Genetics are a USA based group of experienced and well-published scientists who are collaborating to investigate the role genetics play in Spina Bifida. They have been very encouraged by the results from their research to date and excited about its potential application in preventing Spina Bifida. As they continue to investigate these genetic factors, they are now in need of mothers who have had a Spina Bifida affected pregnancy, and, if possible, their children to provide them with saliva samples for their research study.

The Study in more detail

The study continues research to identify genetic factors that influence Spina Bifida. In this phase of the project, SBGenetics are analysing the genes involved in how our body utilises the vitamin, folic acid. One potential outcome of this research could be a genetic test to identify women at-risk for Spina Bifida. Once developed, this genetic test could identify women who are at high risk based on their genetic profile. These women, identified as high-risk based on their genetics, would be counselled under the care of a physician to take a 4mg/day dose of folic acid - the same recommendation given to women at high-risk based on history (prior affected pregnancy or Spina Bifida).

What Will I Need to Do to Participate?

Participation in this study will only involve a few minutes of your time and will be done at home. Here's an overview of the simple 5-step process:

1. Provide your informed consent to the study by reviewing and acknowledging the on-line consent document at www.sbgenetics.org

2. Complete a short on-line questionnaire to gather some background information about your pregnancy and medical history.

3. Provide contact information so we can send you and, if possible, your child a saliva collection kit.

Once we receive your information, we will send you the Saliva Self-Collection Kits, along with instructions for use:

4. When the kit arrives, collect saliva in the tube provided, close and cap the tube.

5. Mail in your sample - place in the pre-addressed, postage-paid envelope and send.

After your sample has been received SBGenetics will send you either a £10 voucher for a specified UK store or make a £10 donation to the Scottish Spina Bifida Association, as you wish.

Please visit www.sbgenetics.org to find out further information about the study along with an easy and convenient way to enroll.

If you would like additional information about the study before beginning please email or write to Spina Bifida Genetics Research Project, 348 Hatch Drive, Foster City, CA 94404