Study Requirements
Who can join the SBRR?Individuals born with spina bifida, and parents who have had a child with spina bifida or anencephaly are invited to join the SBRR. Other relatives of individuals may also be asked to join.
What is involved in joining the SBRR?
Individuals and families who join the SBRR are asked to:
- complete an interview, and
- provide a sample of blood or saliva
Does participation involve any travel or expense?
No. There are no costs associated with joining the SBRR. The study interview is done by telephone and the blood and saliva samples are sent by mail.
Why do the SBRR scientists need this information?
Previous studies suggest that spina bifida and anencephaly are caused by a combination of genetic and environmental risk factors. However, very little is known about the specific factors that cause these conditions.
Information collected during the interviews and DNA (the genetic material) obtained from the blood and saliva samples provide the SBRR scientists with the data they need to study the causes of these conditions. Without this information, it would be impossible to find the causes of spina bifida and anencephaly.
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