Resources & Support

The diagnosis of CDKL5 can be very overwhelming.  We have listed several resources on the right of this page to help you learn more, get in touch with other families, and begin to help us spread awareness about CDKL5 to others.



The CDKL5 International Registry & Database team is pleased to announce the launch of the NEW searchable CDKL5 database on their website at:

This searchable database allows you to explore various functional and clinical aspects of the CDKL5 disorder and look at frequencies by age and mutation group.

This is an important resource for parents, doctors and pharmaceutical companies wanting to know more about this condition. Please feel free to share with your own and other families, clinicians and therapists.

Clicking on ‘Home’ at the top of the database will return you to the registry website at which contains links to recent publications and more information about the registry.

The registry team led by Associate Professor Helen Leonard welcomes your feedback and ideas about other information that could be included. Please do so by emailing the team at:

This is only the beginning! More to come…