Join the SETBP1 Registry
SETBP1 Society has partnered with Simons Searchlight to collect natural history information for individuals identified with SETBP1 variants.
We strongly encourage all families to register with Simons Searchlight. 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 Simons Searchlight 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 Searchlight.
More information on Simons Searchlight and SETBP1:
Learn more about Simons Searchlight
Check out the Participation Process for joining the Simons Searchlight Study for SETBP1 variants.
Listen to Dr Wendy Chung address the question “What can our SETBP1 community members do to help advance research?” – https://youtu.be/sg_6Plg9Gb4.