Simons Searchlight (formerly Simons VIP Connect)

In order to grow knowledge around SETBP1 disorder and the associated gene in the research community, we encourage all families to register with Simons Searchlight. All you will be asked to do is complete some phone interviews and online surveys. You will not be asked to do anything in person. Simons Searchlight is sharing all information with any medical professionals interested in studying the SETBP1 gene. The more of us that are registered with Simons Searchlight, the better it will be in the long run for our families when it comes to understanding how SETBP1 affects our children. Check out the Participation Process for joining the Simons Searchlight Study for SETBP1 variants.

Simons Searchlight is interested in studying our children and how their SETBP1 change relates to Autism and other neurodevelopmental disorders. Your child can participate in this study regardless of whether or not they have an Autism diagnosis.

Dr. Wendy Chung at Simons Searchlight can be reached by emailing coordinator@simonssearchlight.org. You can direct specific questions about your child’s variant/symptoms to Dr. Chung and, if local to New York, you may be able to make an appointment to see her.

Listen to Dr Wendy Chung address the question “What can our SETBP1 community members do to help advance research?” – https://youtu.be/sg_6Plg9Gb4.

Visit Simons Searchlight.