Communication Research - CDKL5 Deficiency Disorder

This is a summary of recent research on how people with CDKL5 deficiency disorder or CDD communicate featuring Dr. Jenny Downs, head of Child Disability Research at Telethon Kids Institute in Australia, and Mel, mom to Annabelle who lives with CDD.

Telethon Kids Institute and the International Foundation for CDKL5 Research recently collaborated to conduct a study that aimed to understand more about how people with CDD communicate. This research is especially important now because we need to be able to measure accurately communication changes in upcoming medication and gene therapy trials.

Moving forward, researchers are using this information to modify existing communication measures to work more accurately with people with CDD.