Data Management

Clinical information will be sent to the Pompe Registry on its electronic data capture system Case Report Forms ("eCRFs"). The information is submitted to a secure centralized location of the Pompe Registry in Cambridge, Massachusetts, U.S.A.

Each participating site will have access to view reports and patient profiles over time of their own submitted data. Sites can request custom data reports from Genzyme’s Pompe Registry team.

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.