How families can participate in CDKL5 research

Hope through Action

Participation in CDKL5 research is critical for building a better future for our children and global CDKL5 community.  There are several opportunities to get involved, from database registries and questionnaires to clinical trials and seeking care at a CDKL5 Center of Excellence.

We understand that living with CDKL5 disorder is overwhelming and often frightening, but we encourage you to find hope by engaging with the CDKL5 community.  One of the most satisfying ways is by participating in research, no matter how small.


Everyone matters and can make a huge difference!

Research Opportunities

seeking your involvement!


CDKL5 Deficiency Disorder Database and Registry

The collection of data, clinical information and demographics of those affected by CDKL5 Disorder is vitally important to understanding the natural history of CDKL5 deficiency, and thereby helping to direct research and clinical efforts to find treatments and a cure.

We encourage every single family to consider participating in this effort.  CDKL5 deficiency is a rare disorder, which means that every child's experience living with this condition needs to be recorded so that the community has a broad and full understanding of the spectrum of CDKL5 deficiency disorder.

We need your help!

Clinical Trial of Ganaxalone


by Marinus Pharmaceuticals

Marinus Pharmaceuticals has launched a pivotal trial of their drug Ganaxalone, a novel neurosteroid, for treatment of epilepsy in CDKL5 Deficiency Disorder (CDD).  This global clinical trial is named the Marigold Study, and is now open for enrollment.  


Michael Aubrey.jpg

This is the main resource for any clinical trial happening in the United States.  Check here and search for CDKL5 to find out the status of any trial approved to enroll patients.

CDKL5 Research Collaborative

PO Box 26

Dexter, MI 48130

CRC is a 501(c)(3) 


EIN# 82-2453342



©2019 by CDKL5 Research Collaborative.