Here’s our latest CTNNB1 registry numbers:
Thank you to everyone for participating and helping the researchers understand CTNNB1 syndrome and developmental milestones for our kids! Our registry is a crucial step in the process of finding treatments and also a cure. We continue to make great progress 👏👏👏
If you haven’t registered yet, please follow these simple steps:
- Visit https://research.simonssearchlight.org/account/create to create an account.
- Upload your child’s genetic report.
- Attend a short call with a genetic counselor to discuss your child’s medical history and development.
- Provide a blood sample if you are interested.
- Families can email Simons Searchlight Coordinator with any questions on how to enroll coordinator@simonssearchlight.org.
Participation for Simons is currently offered in English, Spanish, French, and Dutch, and they will soon be offering participation in Italian, German, and Portuguese.