Content for Families, Carers and Professionals

Register someone with CDKL5 disorder

As part of our efforts to raise awareness and vital funds for global research in to CDKL5 it is important that we collect accurate information on those individuals who have been diagnosed with the disorder. To do this, CDKL5 UK have setup a global registry of such individuals.

The CDKL5 UK registry is an independent registry and all information within it is completely confidential. We will never share or sell your information with anyone without contacting you first. All data will be handled in-line with our privacy policy.

Through this registry, and the separate CDKL5 UK mailing list, CDKL5 UK will also inform parents / carers of social events, such as the CDKL5 Mums meeting, as pictured above and other get-to-togethers we have during the course of a year.

To enter an Adult / Child in to the CDKL5 UK registry, please complete the form below.