In part this is because SGBS is rare and the gene mutation has only recently been identified. This SGBS registry is designed to collect information from patients with SGBS and their relative so that we can begin to understand more about this syndrome. Participants need not to be patients of Washington University, St. Louis Children's Hospital or pediatric patients. Participants may refer themselves to the SGBS Registry. A questionnaire will be completed by the family to obtain a detailed history of the patient with SGBS, clinical features associated with SGBS, and family history of cancer.
All information is confidential.
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