International CDKL5 Disorder Database

What is the International CDKL5 Disorder Database?

The International CDKL5 Disorder Database (ICDD) is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate. IFCR partnered with researchers, Drs Helen Leonard and Jenny Downs, at the Telethon Institute for Child Health Research (Australia) in the development of the database because we recognize its importance in research, treatments, interventions, and clinical trials.

Need for Natural History Studies

Natural History Studies track the course of disease over time, identifying demographic, genetic, environmental, and other variables that correlate with its development and outcomes when treatment is usual care.

A thorough understanding of disease natural history is the foundation upon which clinical development programs for treatments for rare diseases can be built. However, in 2012 little clinical research, let alone any natural history studies existed for the CDKL5 disorder.

The International CDKL5 Disorder Database was established in 2012 as a collaborative effort between researchers located in Australia and the International Foundation for CDKL5 Research. Today it is part of the International CDKL5 Clinical Research Network (ICCRN) and compliments two other patient data platforms.


If you are a family or care worker caring for a child with a mutation in the CDKL5 gene you are invited to participate in this database.