Learn more about the CDKL5 gene and connect with other Simons Searchlight families with the resources below:


Support Resources

  • Simons Searchlight Community – CDKL5 Facebook group
  • International Foundation for CDKL5 Research website
    – International Foundation for CDKL5 Research – Facebook page
    – International Foundation for CDKL5 Research – Twitter
  • Geisinger Developmental Brain Disorder Gene Database – CDKL5


GeneReviews are a great resource to bring to your child’s clinicians. These publications provide a summary of current research on genetic conditions and information on ongoing care.

There is currently no GeneReviews for CDKL5.


Research Article Summaries

We currently do not have any article summaries for CDKL5, but we add resources to our website as they become available.

The information available about CDKL5 is limited, and families and doctors share a critical need for more information. As we learn more from children who have this gene change, we expect our list of resources and information to grow.

You can also visit the Simons Foundation ’s SFARI Gene website to see information for researchers about this gene.


Research Opportunities

Simons Searchlight

Help the Simons Searchlight team learn more about CDKL5 genetic changes by taking part in our research. You can learn more about the project and sign up here.


Family Sources

We do not currently have any stories from CDKL5 families.

Click here to share your family’s story!