Who can use the data?
Any clinician or scientist who researches CDKL5 Deficiency Disorder can apply to use CDKL5 Registry data.
The CDKL5 Registry has a Scientific Advisory Board to ensure that parents, caregivers and people affected by CDD have a voice in the use of their data. It is organized by the Orphan Disease Center and includes CDKL5 community advocacy groups.
We also have an independent Data Access Board whose role is to ensure the correct use of CDKL5 Registry data. The Data Access Board verifies credentials, reviews proposed work to ensure that it is ethical and confirms that the appropriate statistical methodology is used.
Only de-identified data is shared.