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The Spina Bifida Genetics Research Project

ENROLL HERE

The Spina Bifida Genetics Research Project is enrolling mothers in a study to determine if genetic variations in folic acid metabolism account for an increased risk of having a child with Spina Bifida.  From the results of the study, it may be possible to develop a test that can identify at-risk women prior to conception.  They could then be treated by their physicians the same way as women who have had a child with Spina Bifida – with high dose folic acid supplementation.

Participants in the study are asked to complete a brief online survey and provide a DNA sample using a simple at-home saliva collection kit. For more information and to enroll in the SB Genetics Research Project, please go to the website at http://www.sbgenetics.org and select ENROLL. The website and survey are available in both English and Spanish. If you would prefer to take the survey by phone, call 1-866-561-3538.

Upon completion, participants may choose to receive a $10 Target gift card or to have SB Genetics donate $10 to their designated Spina Bifida organization (SBKC). If the study results are positive, SB Genetics will provide complimentary versions of the test to participants.


The SB Genetics Research Project includes scientists from UC Berkeley, Stanford University, UC San Francisco, Children’s Hospital Oakland Research Institute and VitaPath Genetics.

Spina Bifida Online Research Study

Do you have a child (ages 10 – 29) with Spina Bifida? If so, researchers from Kennedy Krieger Institute invite you to participate in an online research study! We are interested in learning more about how and when children with Spina Bifida learn to manage their medical self-care and home responsibilities. The study does not require a clinic visit and can be completed using a computer in your home or elsewhere. The online survey usually takes about 15-20 minutes to complete and is anonymous, so no personal information such as names, social security numbers, or IP (computer) addresses will be collected. Please be aware that if your child is over the age of 18, we will ask you to obtain your child’s consent. If you have questions about this study, Dr. Zabel can be reached at zabela@kennedykrieger.org

If you are interested in participating in this study, we invite you to go to www.psychdata.com and enter survey # 128186. We thank you very much for being willing to help us and other individuals with Spina Bifida by participating in this study!