We encourage families to join the International CDKL5 Registry. The CDKL5 Registry collects data for research and pharmaceutical development, as well as helps caregivers track their loved one’s symptoms. With patient consent, the CDKL5 Registry also advances scientific knowledge by sharing de-identified (anonymous) data with researchers around the world.
The CDKL5 Registry also offers families the opportunity to learn about and participate in CDKL5 clinical studies, including drug trials. The CDKL5 Registry is a joint effort funded and supported by the LouLou Foundation and the Orphan Disease Center at the University of Pennsylvania’s Perelman School of Medicine.
Please click here to join the CDKL5 Registry.