How will this affect my practice?

We ask only that you inform your patients about the appropriate registry and make the enrollment materials available to them. Nurses and appropriate office staff are welcome to assist as well. Patients are contacted directly by the registry for all follow-up.

Because patients self-enroll and we are not asking you to directly provide any information about them, no further involvement is required of you, and it is not necessary to obtain approval from your institution’s IRB. There are no HIPAA requirements beyond those covered by the medical record release.