Corpus callosum disorders (CCD) database - patient survey
Our aim is to collect information about adults and children who have been diagnosed with corpus callosum disorders (CCD). CCD is a relatively rare occurrence, and most studies so far have involved smaller groups of people.
In this study, we aim to survey the Australian population of CCD patients in order to learn more about these disorders and how they affect everyday living. If you or your child has been diagnosed with CCD, we invite you to contact us and take part in this study.
Eligibility
Individuals who have been diagnosed with a disorder of the corpus callosum.
What's involved
We are asking for your participation by filling out a questionnaire and sharing information about you or your child’s diagnosis, implications and family history with us. 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.
Location
This is an online survey.
Reimbursement
There is no payment for participating.
How your data will be secured
All data collected will be anonymised and stored securely on UQ servers. Collected data will be shared with both domestic and international research partners.
Contact
Professor Linda Richards AO
E: corpuscallosumresearch@uq.edu.au
07 3346 6355