ICCRN Data governance Board

The ICCRN has a Data Governance Board which oversees the use of data for the network. Individuals and/or organizations outside of the ICCRN, including other researchers, companies with interest in CDKL5 Deficiency Disorder or others can request de-identified data to be shared. We believe that collaboration is a major pillar in advancing research. The Data Governance Board will review these requests and allow sharing of de-identified data when the requests align with the goals of the ICCRN and IFCR to advance our knowledge and care of individuals with CDKL5 Deficiency Disorder. Any sharing of de-identified data outside the ICCRN will be determined by the ICCRN Data Governance Board. No identifiable data will be shared outside the ICCRN. 

Members of the Data Governance Board include some of the Co-Investigators on this study and a representative from the International Foundation for CDKL5 Research (IFCR). 

If you are interested in requesting de-identified data from the ICCRN, you can begin the process by submitting a data request below. This request will be routed to our Data Governance Board for review. If they feel this request aligns well with our goals, they will reach out to you with a Data Request Form for completion.