Participate in Research
We understand that the information currently available on CUL3-related neurodevelopmental disorder is limited. That's why ongoing research efforts are so important to gain a better understanding of the disorder and provide improved treatment options for those affected.
By actively engaging in research, you contribute to advancing knowledge and paving the way for enhanced diagnosis and support for individuals affected by CUL3-related neurodevelopmental disorder.
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We invite you to explore the following ways to participate in research on CUL3. ​​
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.
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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 coordinator@simonssearchlight.org.
For more information on
Simons Searchlight visit their website
