You will receive updates via text messaging, phone call and/or email about every 3 months. Updates from the CFR 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 pertaining to the biospecimen bank.
You may also receive periodic updates via text messaging, phone call and/or emails pertaining to updates about the CFR, news about research findings, general care guidelines or educational resources, information about meetings/conferences, opportunities to participate in clinical studies or trials, and/or notifications about future natural history studies and possible travel grants to centers of excellence.