How often should I visit the registry to update my information?

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How often should I visit the registry to update my information?

We request that you visit the registry site every 3 months. This helps to ensure your contact and health information are current. You may also periodically receive emails requesting you to log in and answer some additional survey questions. Your ongoing participation helps ensure that data remains responsive to current research needs. Also, the registry will continue to evolve as research advances. Additional surveys may be added and existing ones may change based on future need. Some will be shorter because only a few answers are needed; others will be more comprehensive, as needed.