Registry Updates
(from Simons Searchlight)

Simons Searchlight hosts our official CUL3 registry. 

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A "patient registry" is a collection of standardized information about a group of patients who share a condition (like CUL3-related neurodvelopmental disorder). By sharing this information, families can help researchers better understand the natural history of a health condition and work toward more effective care. 

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Simons Searchlight is an international online research program that studies rare genetic neurodevelopmental disorders. Participating families complete online surveys to share detailed medical and behavioral information over time. Each quarter, Simons Searchlight compiles key findings into accessible reports that provide the latest insights from the collected data. You can view the CUL3 quarterly reports below. 

 

*CUL3 Support & Awareness encourages all families affected by a CUL3-related condition to consider participating in this important research initiative. Learn more and how to participate here.​​