Objectives To explore and compare the prevalence and expression of specific health-related variables in a large survey sample of persons with agenesis of the corpus callosum (ACC) and their siblings.
Methods Caregiver surveys of individuals with ACC (n = 189) and their siblings (n = 189) provided data regarding diagnoses, physical features, neurological and sensory information, feeding, elimination and sleep concerns, and some behavioural features.
Results Compared with their siblings, individuals with ACC had more concurrent conditions and were more likely to have altered pain perception and sensitivity to touch. In addition, individuals with ACC had more sensory deficits and abnormalities as well as altered patterns of feeding/eating, elimination and sleep.
Conclusions These data raise important questions for future research and suggest the need for increased vigilance by caregivers and health-care professionals of individuals with callosal disorders. Early detection and intervention may help prevent or ameliorate health problems in this population.