Help Our Researchers

CDKL5 Natural History Study

Help advance our knowledge of symptoms and progression of CDKL5 Deficiency Disorder by arranging a meeting with a clinician and answering a few questions. Some appointments can be done via telemedicine, too. Find out more here.

CDKL5 Clinical Research & Trials

Learn about new drugs under development and other current CDKL5 clinical research.

CDKL5 International Registry & Database

As a parent, you can enroll in this registry and fill out a questionnaire. By responding to the questions, you help inform our understanding of the progression of CDKL5 Deficiency Disorder. Parents have been contributing to this database since it was established in 2012. It is a collaborative effort between researchers in Australia and the IFCR and the data has been used in multiple CDKL5 Deficiency research publications. For more information, click here.

CDKL5 Centers of Excellence

The IFCR CDKL5 Centers of Excellence provide treatment and care to those affected by CDKL5 Deficiency Disorder. Each patient visit also helps us gather data to further clinical research.

Organ & Tissue Donation

Organ donation is a critical part of CDKL5 research and we honor the generous and selfless act of those who choose this path after a loved one has died. To learn more, please visit this page.