California Institute of Technology (Caltech)
This is the first study examining behavioural development in children with Agenesis / Dysgenesis of the Corpus Callosum (ACC) from birth into early childhood. We cannot begin to truly appreciate the potential for early intervention in ACC until we understand how these diagnoses are influencing behaviour and neurological development during this critical period of time.
Study Goals: Our aim is to characterize/describe the behaviour development of children with agenesis/dysgenesis of the corpus callosum. Ultimately, this understanding can be used to create more effective intervention techniques and supports for children and adults with ACC.
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. On medical reports this malformation is typically called dysgenesis of the corpus callosum, complete or partial agenesis of the corpus callosum or 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 behaviour. Parent’s will also be interviewed by phone/Skype about their family and child’s behaviour. 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 behavioural assessment (all travel expenses paid). Nominal compensation will be provided for your time ($20 US for each long-distance assessment and $50 US for direct assessments).
To enrol visit: https://emotioncaltech.co1.qualtrics.com/jfe/form/SV_9Xr1cy47DnsOHiJ
To find out more about the study visit: www.accinfantstudy.com
To keep up to date with developments visit https://accinfantstudy.com/research-updates-acc- infant-study/
Is your child over 36 months of age? We are also recruiting anyone up to the age of 18 for our child study.
To enrol visit: https://emotioncaltech.co1.qualtrics.com/jfe/form/SV_9Xr1cy47DnsOHiJ
Dr Lynn Paul
Caltech
