title: Adolescent and adult issues in CHARGE syndrome.
abstract: Very little information has been published about adolescents and older individuals with Coloboma, Heart defects, Atresia choanae, Retarded growth and development, Genital hypoplasia, Ear anomalies and deafness (CHARGE) syndrome. This paper describes the results of a study that identifies the unique issues faced by adolescents and adults with CHARGE. Descriptive information was gathered from parents of patients with CHARGE, and/or the patients themselves, about their developmental, medical, educational, and social history. The resulting body of information provides important insights into the prognosis and special needs of individuals with CHARGE, as well as further research questions.
authors.affiliation: Department of Pediatrics, IWK Health Centre, Dalhousie University, NS, Canada.
authors.forename: Kim D
authors.initials: KD
authors.lastname: Blake
authors.forename: Nancy
authors.initials: N
authors.lastname: Salem-Hartshorne
authors.forename: Marie Abi
authors.initials: MA
authors.lastname: Daoud
authors.forename: Janneke
authors.initials: J
authors.lastname: Gradstein
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D002754:Choanal Atresia / Q000150:complications* / Q000175:diagnosis / Q000523:psychology; D003103:Coloboma / Q000150:complications* / Q000175:diagnosis / Q000523:psychology; D004423:Ear / Q000002:abnormalities*; D005260:Female; D005835:Genitalia / Q000002:abnormalities*; D006130:Growth Disorders / Q000150:complications* / Q000175:diagnosis / Q000523:psychology; D006330:Heart Defects, Congenital / Q000150:complications* / Q000175:diagnosis / Q000523:psychology; D006801:Humans; D008297:Male; D020380:Needs Assessment; D011379:Prognosis; D013577:Syndrome