Parental experiences of scoliosis management in Rett syndrome.

Background: Scoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management of scoliosis and this study explored parental experiences of various aspects of different management options.

Methods: Publicly available Rettnet postings informed the development of an online questionnaire about scoliosis and its management in Rett syndrome.

Predictors of scoliosis in Rett syndrome.

Scoliosis is a common clinical manifestation of Rett syndrome, a neurodevelopmental disorder that almost exclusively affects girls. Following apparently normal development, these girls typically regress and lose previously attained cognitive, social, and motor skills. Severe intellectual and physical disabilities remain throughout life.