If I join the Cavernous Malformation Registry, what am I committing to?

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If I join the Cavernous Malformation Registry, what am I committing to?

Your participation in the Cavernous Malformation Registry may include the following:

  1. Creating an account and providing your consent
  2. Completing research surveys
  3. Uploading or linking your electronic health records (optional)

Your participation is entirely optional, and you may withdraw at any time.  Registry participants also have the opportunity to participate in the Alliance to Cure Cavernous Malformation biospecimen repository.