Not able to make it to the STXBP1 Summit+ in Colorado but want to contribute biospecimens for some of the exciting projects being offered to the community by COMBINEDBrain? Consider joining them on the road!
COMBINEDBrain is a non-profit consortium of over 80 patient advocacy groups for rare, genetic neurodevelopmental disorders. They recognize the need to collect patient samples for researchers to identify biomarkers to be used to treat/develop treatments for our children. They are on a mission to collect around 500 samples from our member organizations over the next 6-8 months and the STXBP1 Foundation is one of them. Samples collected from our community will be stored and available to researchers across the world.
Are you or one of your family members interested in participating in this exciting project for STXBP1?
2025 COMBINEDBrain Roadshow
Who: Any participant diagnosed with one of the disorders from the COMBINEDBrain consortium, like STXBP1, or unaffected sibling
What: COMBINEDBrain will be collecting urine samples and blood samples (processed for plasma and a finger stick) to be stored in a CB Biorepository and available for select biomarker projects as well as other interested researchers. They will also collect several online surveys to be completed by caregivers.
Where: COMBINEDBrain is collecting samples all across the country this year. Please see this list of locations to find the closest biorepository collection to you. You may attend ANY of these meetings. If you are unable to attend a conference, but are still interested in participating please reach out to the STXBP1 Foundation at research@stxbp1disorders.org.
Sample Size: Our goal is to collect 20 samples from each patient group.
How: Contact the STXBP1 Foundation at research@stxbp1disorders.org to further determine eligibility and the best way and location to participate.
