Title:

Agenesis/Dysgenesis of the corpus callosum database

Description:

Our aim is to collect information about adults and children who have been diagnosed with agenesis or dysgenesis of the corpus callosum (ACC). Malformations of the corpus callosum are relatively rare and most studies so far have involved smaller groups of people.

In this study we aim to survey the Australian population of ACC patients to assess the range of disorders associated with callosal malformations in Australia. If you or your child has been diagnosed with agenesis or dysgenesis of the corpus callosum we invite you to contact us and take part in this study.

Requirements/time commitment:

We are asking for your participation by filling out a questionnaire and sharing with us information about you or your child’s diagnosis, implications and family history. Any copies of documentation such as digital copies of MRI scans would be very much appreciated. No active participation in any further research is needed at this stage. You will be asked to sign a consent form that will allow us to store your or your child’s information in our database. In the questionnaire you will have the option to indicate if you wish to be informed of further studies. At any given time you have the right to retract your participation and remove your information from the database.

Eligibility criteria:

  • Individuals who have been diagnosed with malformations of the corpus callosum.

Contact:

Professor Linda Richards
richards@uq.edu.au
07 3346 6355