The new CDKL5 Registry is now live!
The CDLK5 Registry collects data for research and pharmaceutical development, as well as helps caregivers track their loved one’s symptoms. Only legal guardians can participate.While the CDKL5 Registry has been open since 2018, it has been re-designed to be more user-friendly. The LouLou Foundation and Orphan Disease Center worked together to update and re-launch the platform.
The CDKL5 Registry is part of a larger CDKL5 ecosystem, including the International CDKL5 Disorder Database and Connect CDKL5. It is being developed in collaboration with Telethon Kids and IFCR. There is also an agreement in place to allow de-identified data from the CDKL5 Registry to be shared with IDCC, for those who choose to participate in both platforms.
The CDKL5 Registry is available in English for now but will be multi-lingual by the end of 2020.