Confidentiality

Patient Confidentiality

To maintain patient confidentiality, all patients are referenced by Registry identification (ID) number only, not by name. 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.

Physician Confidentiality

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.

Sponsor Confidentiality & Data Management

Members of Genzyme Corporation's Pompe Registry Team and designated computer support staff - as well as representatives from public health regulatory agencies (such as the Department of Health and Human Services or other authorized government agencies) - may review the information in the Pompe Registry as part of maintaining the registry’s data systems. They will not, however, have access to any identifying patient information.