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Meaningful change for people with Developmental and Epileptic Encephalopathy
Developmental and epileptic encephalopathy (DEE) conditions are rare, and most have a genetic cause.
Research Advisor Application
Guide our sibling research!
Be a Research Advisor!
Guide our sibling research!
Rural Cancer Siblings
We want to hear from siblings living outside of Australian cities!
Sibling Support and Teen Talk Studies
Sibling Support and Teen Talk Studies form
Infographics
The visual representation of Teen Talk study findings
Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric study
Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD.
The CDKL5 Disorder
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.