Adolescent and Adult Issues in Charge Syndrome

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...

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Bibliographic Details
Published in:Clinical pediatrics 2005-03, Vol.44 (2), p.151-159
Main Authors: Blake, Kim D., Salem-Hartshorne, Nancy, Daoud, Marie Abi, Gradstein, Janneke
Format: Article
Language:English
Subjects:
Activities of Daily Living
Adolescent
Adult
Choanal Atresia - complications
Choanal Atresia - diagnosis
Choanal Atresia - psychology
Coloboma - complications
Coloboma - diagnosis
Coloboma - psychology
Ear - abnormalities
Female
Genetics
Genitalia - abnormalities
Growth Disorders - complications
Growth Disorders - diagnosis
Growth Disorders - psychology
Heart Defects, Congenital - complications
Heart Defects, Congenital - diagnosis
Heart Defects, Congenital - psychology
Humans
Male
Medical diagnosis
Medical disorders
Needs Assessment
Pediatrics
Prognosis
Syndrome
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Description
Summary: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.
ISSN:0009-9228
1938-2707
DOI:10.1177/000992280504400207