Patient Enrollment

You will need the following to enroll a new patient in the Fabry Registry:

• Physician ID Number - A unique physician ID Number will be sent to you upon physician enrollment

• Obtain signed Patient Authorization

• Physicians are encouraged to establish a confirmed diagnosis of Fabry disease for each patient. Confirmed diagnosis is defined as:

Enrolling a New Patient
New patients may be enrolled in the Fabry Registry and receive Patient ID numbers immediately by one of two means: by completing the Patient Enrollment/Initial Contact form and faxing it to the Fabry Registry, or using EDCR, by entering patient enrollment information in the Study Reporting Center (web-based system). Once the site receives a confirmation of patient enrollment with a Patient ID number, data collection and submission can proceed using the Fabry Registry paper CRFs or eCRFs (EDCR). If the Patient Enrollment/Initial Contact paper CRF was faxed to enroll a patient, the original top two copies of the form should be submitted to the Fabry Registry by mail, along with any other completed Fabry Registry paper CRFs.

Confirmation of Enrollment
A confirmation of enrollment will be sent to the site for each newly enrolled patient following receipt of the Patient Enrollment Form. The confirmation will provide the patient's Fabry Registry identification information (ID number, initials, date of birth, and gender).