1. The corpus callosum is the major nerve structure connecting the two sides (hemispheres) of the
brain. It allows communication between the hemispheres.

2. People with a disorder of the corpus callosum (DCC) are born missing part or all of their corpus
callosum. This may be called agenesis, dysgenesis, hyperplasia or hypoplasia of the corpus
callosum. It is a lifelong condition. Causes can be genetic, environmental or unknown. There are
more than 200 medical conditions or syndromes that have a DCC as one component of the
clinical features.

3. DCCs are a relatively common brain abnormality in newborns and occur in approximately
1:4000 live births, affecting approximately 6500 Australians. Some research estimates that it may
be as common as 1:3000 live births.

4. The ICD10 (International Statistical Classification of Diseases) code is Q04.0.

5. A DCC diagnosis is confirmed by MRI or CT imaging. Advancements in imaging have enabled
DCCs to be diagnosed in utero. There are relatively high termination rates. Diagnoses may also
be made in childhood or in adulthood after an incidental MRI or CT scan.

6. Corpus callosum disorders are heterogeneous in cause, presentation and management. People
with apparently the same DCC may have very different impacts, requiring a holistic approach to

7. Professional expertise, knowledge and experience with DCC are generally limited and sporadic.
Accurate information can be difficult to access but there is growing body of research.

8. A DCC affects the speed and transfer of sensory-motor processing information, complex
reasoning and problem solving skills and cognitive processing. Early intervention is effective in
helping babies, children and adults meet milestones.

9. A DCC can have cognitive, behavioural and social impacts ranging from mild to severe. A
minority of people will have very mild impacts and not need support. Most will benefit from
support even if symptoms are not always apparent from simple ‘bedside assessments.’ Many
people will display obvious impacts requiring targeted supports.

10. Adults with ACC in Australia have been typically under supported and under recognised. This
can contribute to isolation, mental health issues and reduced capacity to achieve in education,
employment and relationships. Although the introduction of the NDIS improves access to
support, many adults experience difficulties finding health professionals who understand DCC.