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Guide our sibling research!

We want to hear from siblings living outside of Australian cities!

Sibling Support and Teen Talk Studies form

The visual representation of Teen Talk study findings

One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.

Our research covers a broad range of areas from the influence of mutation type on health outcomes to factors impacting on the lives of familes.

We also wanted to find out whether any particular behaviours were associated with any specific mutation types.

Regression, including the loss of previously learned skills, such as hand function and communication skills, is one of the most suggestive features of Rett synd