Refer to the Data Reports section of the Fabry Registry Manual for a more detailed explanation of possible data reports and the process for requesting a report. Since no experimental procedures are included in the protocol, expedited review by the committee chairperson is often only necessary to approve the Patient Authorization. 8.1 Patient Authorization Patients shall sign an authorization before data is submitted to the Registry. A patient's signed authorization is necessary for participation in the Registry. If supplemental laboratory or imaging reports are submitted to the Registry, the patient's name should be deleted and the patient's initials and ID number should be added to each attached page.
All physician information is confidential.
Furthermore, physician-specific patient data will remain confidential and will not be released to other physicians without prior written approval. No physician to physician data comparisons will be made. The patient may decline to participate or withdraw consent at any time and without prejudice to further medical treatment. The Fabry Registry is sponsored by Genzyme Corporation. Genzyme reserves the right to discontinue the Registry at any time.