Study Goals: Our aim is to characterize/describe the behavior development of children with dysgenesis/agenesis of the corpus callosum. Ultimately, this understanding can be used to create more effective intervention techniques and supports for children and adults with DCC/AgCC. 

Who can participate? Parents / primary caregivers of a child who is less than 36 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 be proficient in reading and speaking English.

What are participants asked to do? Parents will be asked to complete online questionnaires about themselves and their child’s behavior. Parent’s will also be interviewed by phone/skype about their family and child’s behavior. Most families will participate on multiple occasions (up to 5 times between 6 and 36 months of age) and some families will be invited to fly to the University of Minnesota for a direct behavioral assessment (all travel expenses paid). Nominal compensation will be provided for your time ($20 US for each long-distance assessment and $150 US for direct assessment).

Learn more: If you’re interested in learning more about this study, please visit our DCC Lifespan Studies Website. If you would like to participate, please fill out our participation form or email us at admin@accinfantstudy.com.