Join the CDKL5 deficiency disorder registry
As part of our commitment to expand our knowledge about this condition, it is important that we collect information about those living with CDKL5 deficiency. Working with other CDKL5 patient groups, we are creating an international registry to accurately gather information and generate a resource that can be used to drive forward research. We encourage all those with a family member diagnosed with CDKL5 deficiency to register and support this initiative.
The registry is being organised and run but the Orphan Disease Centre at the University of Pennsylvania, and not by CDKL5 UK. The registry will be available shortly, but in the meantime, you can register your interest by following the link below.