Neurodevelopment in Children with Craniosynostosis

2018

While craniosynostosis has been found to be associated with a range of developmental delays, the nature and course of these delays are not well understood. This study aims to describe the longitudinal development of 350 patients with craniosynostosis from infancy to age 14 years, as well as identify possible surgical, genetic, familial, and intervention factors that may impact development. In the first phase of the study, that takes place over four study visits using the Bayley-III in the period patients are newborn to age 3.5 years, participants consist of patients diagnosed with craniosynostosis who are scheduled for or have completed surgery at CHLA. The second phase includes those patients from the first phase who completed at least one study visit prior to age 3.5 years. The second phase consists of study visits at ages 7, 10, and 14 years old and includes a comprehensive assessment across domains of functioning. Analyses will be within subgroups of craniosynostosis and include describing patterns of testing results at different ages and over time. Analyses will also identify variables associated with delays to inform treatment planning and families.

craniosynostosis

Performing Research or Evaluation

Health-Related Activities

Professionals and Para-Professionals, Children/Adolescents with Disabilities/SHCN

Geographic Areas, Urban

Single-County

N/A