Simons VIP Connect

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 VIP Connect. 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 VIP is sharing all information with any medical professionals interested in studying the SETBP1 gene. The more of us that are registered with Simons VIP, the better it will be in the long run for our families when it comes to understanding how SETBP1 affects our children.

Though Simons VIP is interested in studying our children and how their SETBP1 change relates to Autism, please note that not all children with SETBP1 changes will be diagnosed with Autism. Your child can participate in this study regardless of whether or not they have an Autism diagnosis.

Dr. Wendy Chung at Simons VIP Connect can be reached by emailing coordinator@simonsvipconnect.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. However, she has stated that her answers will only be as good as the data that is published, of which there is very little. Do not be surprised if there are many answers of “I don’t know.”

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