The Spina Bifida Research Resource (SBRR) is a patient registry, database and DNA bank that ultimately will be used for etiologic studies of spina bifida. The SBRR is based on information from individuals with spina bifida and their relatives (parents, sibs, maternal grandparents and maternal aunts). Study subjects are recruited through the spina bifida clinic at CHOP. Recruitment of subjects for this study began on October 20, 1997. To date (January 5, 1998) 61 families received a mailed invitation to participate in this study. Of these families, the study genetic counselor has meet with 31 (51%) to discuss the project in greater detail. Failure to meet with families who have received a letter was attributable to: canceled appointment (63%), no show (20%), or scheduling conflict (17%). Among those families who have meet with the study genetic counselor, 71% agreed to participate in the project, 16% are undecided and 13% declined to participate. GCRC nurses have drawn blood samples from a total of 14 individuals with spina bifida and 20 relatives (n=34).
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