The Symposium on Challenging Behaviors in CHARGE Syndrome will take place as a component of the Sixth International CHARGE Syndrome Conference to be held in Cleveland, Ohio, on July 25-27, 2003. CHARGE syndrome refers to children with a specific set of birth defects. """"""""CHARGE"""""""" originally came from the first letter of some of the most common features seen in these children: coloboma, heart defect, atresia of the choanae, retardation of growth and development, genital and urinary abnormality, and ear abnormality and/or hearing loss. The diagnosis of CHARGE is based on finding several of these and possibly other features in a child. CHARGE was first identified in 1979, and more has been learned about its development over time. One issue that has been of considerable concern to parents is the development of severe behavior problems. Many children with CHARGE are also diagnosed with autism, attention deficit disorder, obsessive-compulsive disorder, as well as tic disorder. The Conference will bring together medical and educational personnel along with parents and families of children with CHARGE. The purpose of the symposium, for which funding is sought, is to bring together leading researchers in the behavioral components of CHARGE. There are four goals: 1) to share research and clinical findings regarding the behaviors of children with CHARGE in order to identify what is known, what is being studied, and what needs to be studied; 2) to develop and facilitate collaboration in the research on behavior problems in CHARGE; 3) to discuss and debate the behavioral phenotype issues of diagnosis, etiology, prevalence, and description of behavior problems based on research; and 4) to suggest current and future research needs.
Hartshorne, Timothy S; Hefner, Margaret A; Davenport, Sandra L H (2005) Behavior in CHARGE syndrome: introduction to the special topic. Am J Med Genet A 133A:228-31 |