Join the Registry

SETBP1 Society has partnered with Simons VIP to collect natural history information for individuals identified with SETBP1 variants.

We strongly encourage all families to register with Simons VIP. The process to register is simple. You will be asked to complete some phone interviews and online surveys — you will not be asked to do anything in person. You can live anywhere in the world and still participate. Each family that registers with Simon’s VIP advances our understanding of how SETBP1 affects our children. And as an added benefit, you will receive Amazon gift cards for completing surveys and phone calls from Simons VIP.


More information on Simons VIP and SETBP1:




Learn more about Simons VIP Connect

Download the Simons VIP Brochure as PDF