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Simons Searchlight is an international research program that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders. Simons Searchlight is funded by the Simons Foundation Autism Research Initiative (SFARI) which aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).


By collecting detailed family, medical, developmental and behavioral information through online surveys and phone interviews, as well as and blood samples, Simons Searchlight takes a deep dive into these disorders. They share the information and blood samples with leading geneticists and scientists around the world to use to improve the lives of people living with rare genetic neurodevelopmental disorders. Participation is open worldwide to people who speak English, Dutch, French, and Spanish, and more languages are coming soon.

People of any age with a CUL3-related diagnosis and their family members can sign up. Participants may have a diagnosis of autism, epilepsy, language impairments, or intellectual disability, but none of these is a requirement to join. If you have any questions, please contact their Study Coordinators at

For more information on

Simons Searchlight visit their website


See the outline of steps to participate. If you would like a more detailed explanation, the tutorial video walks you through the entire registration process.


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