Our research focuses on behavior in CHARGE syndrome. Children with CHARGE often display behaviors which are very difficult to manage, and may be described as autistic-like, obsessive-compulsive, hyperactive, self-stimulatory, repetitive, and self-injurious. The aim of our research is to understand the sources of this behavior and how to intervene with and even prevent it. We hope to identify a "behavioral phenotype" for CHARGE. James Harris from Johns Hopkins defines a behavioral phenotype as "A pattern of behavior that is reliably identified in groups of children with known genetic disorders and is not learned" (Harris, 1995). In other words, if you behave this way, you most likely have CHARGE.
Because there are no concentrations of individuals with CHARGE, we by and large have to rely on surveys and instruments that parents can complete. One exception is the research by doctoral student Kasee Stratton who has traveled around the US, Canada, and Australia interviewing young adults with CHARGE about stress. Most of the participants in our research are parent members of the CHARGE Syndrome Foundation or are identified through the CHARGE listserv or by professionals. We tend to have a very high rate of return in this research, generally at least 80%.
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