Does your child have

Dygenesis of the Corpus Callosum?

If your child has been diagnosed with Dysgenesis, Agenesis or Hypoplasia of the Corpus Callosum, and you would like to participate in research, register now to be included in the study.

Introduction to the

DCC Studies of Infants & Children

Our Goal:

We are seeking better ways to help children with DCC grow to their full potential by studying mental and behavioral development in infants and children with DCC.

Two Studies:

DCC INFANT STUDY – Includes parents of children with DCC under 15 months old who meet additional screening criteria. Parent provides information at up to 6 timepoints before child turns four years. After completing DCC Infant Study, participants can transfer into DCC Infant & Child Study.

DCC INFANT & CHILD STUDY – Includes parents of all children with DCC under 18 years old. Parent provides information from enrollment until child reaches age 18 (up to 6 timepoints before age four and annually thereafter).

DCC Infant Study   /   DCC Infant & CHILD Study

How These Studies Work

Who Can Participate?

The parent or primary caregiver of a child who is:

  • Diagnosed with Agenesis,
    Dysgenesis or Hypoplasia of
    the Corpus Callosum.
  • DCC Infant Study – child must be less than 15 months old with no polymicrogyria, microcephaly, trisomy chromosomal diagnoses, holoprosencephaly, tumors, cerebro-vascular incidents, very low birth weight (< 1500 grams), very pre-term birth (< 32 weeks), or intractable epilepsy.
  • DCC Infant & Child Study – all children less than age 18 years

The parent or primary caregiver must be 18 or older and must be able to read, understand, and complete forms in English.

Participants will need to provide

  • Information about the
    child’s development and their own
    well-being via online surveys
    and phone-based interviews,
    at up to 6 timepoints before
    the child turns four & annually up to 18 years.
  • DCC Infant Study – timepoints occur only between 6 and 48 months.
  • Copies of the child’s brain
    scans and/or diagnostic
    reports.

Participants will Receive

  •  Updates on published findings from these studies.
  • Invitations for associated studies.
  • DCC Infant Study participants may be invited for direct behavioral
    assessment at University of
    Minnesota.
  • DCC Infant Study – participants will receive financial compensation at each timepoint.