CDKL5 Clinical Research & Trials

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

Learn about the research you can participate in remotely.

CDKL5 Registry Alliance

The IFCR’s Connect CDKL5 platform is one of three platforms worldwide that research CDKL5 Deficiency Disorder, including:

The International CDKL5 Disorder Database (ICDD) is an ongoing research database that has used data provided by caregivers to inform multiple publications in the scientific and medical literature since 2012. The ICDD is managed by researchers at Telethon Kids Institute, an independent non-profit research organization affiliated with the University of Western Australia and co-located with the Perth Children’s Hospital. Families will also be able to consent for data submitted to the CDKL5 Registry to be accessed by the ICDD.

The CDKL5 Registry is funded by the LouLou Foundation is dedicated to advancing research into the understanding and development of therapeutics for CDKL5 Deficiency Disorder. The CDKL5 Registry is a joint effort of the Orphan Disease Center at the Perelman School of Medicine, University of Pennsylvania. We also partner with the International CDKL5 Disorder Database, Connect CDKL5, and the CDKL5 Alliance.

We invite all caregivers to enroll in each of these three groups. By working together, we help further research and advocacy efforts for all those affected by CDKL5 Deficiency Disorder.

CDKL5 Natural History Studies

The International CDKL5 Disorder Database (ICDD) was established in 2012 by researchers at Telethon Kids Institute in Perth, Australia. In 2019, these Australia-based researchers teamed up with the United States CDKL5 Centers of Excellence. Together, we are facilitating CDKL5 Deficiency Disorder (CDD) clinical research endeavors across the globe, and we call this partnership the International CDKL5 Clinical Research Network (ICCRN).

Our collaborative research network has been made possible by the generous support of the National Institute of Neurological Disorders and Stroke (NINDS) and the International Foundation for CDKL5 Research (IFCR).

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.