Longitudinal Study of Behavior and Development in Infants and Toddlers with DCC
Does your child have a corpus callosum malformation?
Is your child with DCC younger than 5?
This is the first study examining the behavioral impact of DCC from birth into early childhood. We cannot begin to truly appreciate the potential for early intervention in DCC until we understand how these diagnoses are influencing behavioral and neurological development during this critical period.
Our aim is to understand how the behavioral development of children with dysgenesis of the corpus callosum (DCC) is influenced by their unique neuroanatomic, genetic and medical traits. Ultimately, this understanding can be used in creation of more effective intervention techniques and support for children and adults with DCC.
Who can participate?
Parent / primary caregiver of a child who is less than 60 months of age and who has received a clinical diagnosis of corpus callosum malformation via MRI, CT, or ultrasound. Dysgenesis of the corpus callosum includes complete and partial agenesis of the corpus callosum (ACC or AgCC) and hypoplasia of the corpus callosum.
Caregivers must be 18 years or older and must able to complete online forms, consents, and interviews in English.
What are participants asked to do?
Participants will be asked to complete several hours of online questionnaires regarding your child’s medical history and behavior, as well as your own moods and major life events impacting your family.
Questionnaires may be repeated periodically prior to the child’s fifth birthday.