Enrolling in a research study is a great way to help advance the understanding of ACC and the development of effective interventions, but the idea of enrolling can be daunting when you don’t know what to expect. Understanding the purpose of the study and what will be involved will help you to decide if participating is right for you.
About the ACC Infant Study
Caltech and the University of Minnesota have come together to identify new possibilities for helping children with ACC. The ACC Infant Study is the first study examining behavioral development in children with Agenesis/Dysgenesis of the Corpus Callosum 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 behavior and neurological development during this critical period of time.
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 will you be asked to do?
Enrolling in the study
- You will fill-out a short registration form asking for basic contact information and consent to participate. Then we will schedule a brief call to answer any questions you have and confirm your child’s eligibility.
Participating in the study
- You will complete online questionnaires and phone interviews about your child’s medical history, feelings, thoughts, and behavior, as well as your own behavior and medical history. These will be repeated on up to 5 occasions over a 2.5 year period when your child is between 6 and 36 months of age (around the ages of 6, 12, 18, 24, and 30/36 months). Each online survey takes approximately 2-3 hours to complete and phone interviews take 30-60 minutes.
- You will also be mailed a kit to contribute salivary samples for future extraction of salivary DNA.
- Some families will be asked to participate in an additional phase of this research that includes visiting the University of Minnesota for an in-person developmental assessment (travel expenses will be covered). Your decision to participate in this secondary phase of research will be made at a later date, and will not affect your participation in the other phase of the research.
If you agree to take part in the ACC Infant study, we will pay you $20 US for each session. If all longitudinal sessions are completed, you will receive an additional $50 US.
Please participate in research! It is one of the most powerful ways you can educate and inform the world about ACC.
To find out more about the study visit: www.accinfantstudy.com
To enroll visit: https://emotioncaltech.co1.qualtrics.com/jfe/form/SV_9Xr1cy47DnsOHiJ
Is your child over 36 months of age? We are also recruiting anyone up to the age of 18 for our child study. To enroll visit: https://emotioncaltech.co1.qualtrics.com/jfe/form/SV_9Xr1cy47DnsOHiJ
Post and information provided by the research team at Caltech.