How long will the information I share be stored in the Cavernous Malformation Registry?

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How long will the information I share be stored in the Cavernous Malformation Registry?

Information you share will be stored in the Cavernous Malformation Registry for as long as the Registry exists and you authorize participation. If, for any reason, this registry is discontinued, you will be notified and you will have the opportunity to download information stored in your Registry profile.