The Child and Adolescent Learning and Living Study (CALLS)

CALLS

Hemifacial microsomia (HFM) is characterized by asymmetric underdevelopment of the face. Although HFM is the second most common craniofacial malformation, there have been few studies of its impact on affected children. We have conducted the first large case-control (1997-2002) and follow-up (2004-2009) studies of children with and without HFM. In our follow-up study, we examined the potential influence of HFM on social-emotional and neuropsychological development. We found that children with HFM between 6-12 years of age were more likely to be shy and nervous, had more social challenges, and experienced greater academic difficulty based on results from neuropsychological screening measures.

We have recently been funded to follow-up this cohort of children with and without HFM when they are between the ages of 11-17 years. In this study, the Child and Adolescent Learning and Living Study (CALLS), we hope to do a more detailed assessment to learn more about the children’s social-emotional development, academic achievement, and neuropsychological functioning. We will directly assess their speech/language patterns, memory, and learning, conduct complete hearing and vision screens, and take photographs so that we can better characterize the typical characteristics or phenotype of HFM. We will also gather information from the children’s parents to learn more about their adaptive behavior, sleep patterns, social participation, and quality of life. In doing so, we expect to identify areas in which strategies are needed to reduce the impact of functional impairments in everyday life and to promote healthy outcomes.

All children with and without HFM who participated in our first follow-up study are eligible to participate in CALLS. To gather the information we need from families who live across the United States and Canada, we will send trained staff to the cities and towns where study subjects live to conduct standardized testing of children and youth and to gather survey data from parents. Educational records and medical history questionnaires will be used to gather updated information about health and educational supports and services. All study participants will be compensated for their time and have the option to receive a summary of their child’s testing results (e.g., to help with educational or vocational planning).

For more information, please see our CALLS Study Overview