You will receive updates via email about every 3 months. Updates from the Cavernous Malformation Registry may include (1) requests to update your demographic, health, or genetic data; (2) requests or reminders about new surveys, to finish incomplete surveys, or to start a new survey; (3) information about how to link or upload your medical records and/or for specific medical record requests; (4) information about the biospecimen bank.
You may also receive periodic updates via email about the Cavernous Malformation Registry, news about research findings, general care guidelines or educational resources, information about meetings/conferences, opportunities to participate in clinical studies or trials, and notifications about future natural history studies.