“All-In” Campaign for
Natural History Studies Participation

Researchers need a comprehensive set of STXBP1 disorder patients’ history including survey responses and past medical records to accompany their therapeutic studies as they search for a cure. The STXBP1 Foundation is eager to accelerate all our lines of research and is committed to providing a readily available set of patient data for their use. To do this we have selected 3 industry leading partners to collect and share this valuable information with our researchers in a safe, secure, and organized way. We’ve named this current research campaign “All-In” because we need all three of the different sets of information each partner collects to provide the full picture for researchers. To accomplish this deliverable, we will need as many as possible of each of our families to be all-in by participating in all-three of the studies.

Our All-In goal for the first half of 2023 is to have 100 STXBP1 Disorder families participating in all three of the Natural History Study platforms:

• RARE-X

• Simons Searchlight

• Ciitizen

You can help us reach our goal over the next few months just by sharing your time. It’s easy to do and it’s free. We have all the details on our Natural History Studies page here.

Plus, we can add you to our Wall of Fame when you pledge to join in for all 3 studies! Just let us know if you are committed to helping and want to be listed by emailing naturalhistory@stxbp1disorders.org