You are currently viewing A New Digital Natural History Study for CTNNB1 Syndrome
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Attention CTNNB1 families!

CTNNB1 Connect and Cure is excited to announce our partnership with Invitae’s Rare Patient Network on the Ciitizen platform. We are joining many other rare disease groups that have been using Ciitizen to build high-quality natural history data in a fraction of the time. Researchers and pharmaceutical companies have already used the data to submit Investigational New Drug (IND) filings with the FDA.

This is an incredible opportunity for our community to accelerate research. Registering takes only a few minutes, and the Rare Patient Network team will collect all your or your loved one’s medical records. You will receive full access to the records through your personal portal and can share them with whomever you choose. This natural history study doesn’t require any clinical visits. The data will be extracted from your existing medical records, de-identified for your privacy and protection and, with your consent, organized to share with researchers and pharmaceutical companies.

Visit to get started today!

Note: Currently only available for families in the U.S.

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