Physician's Role

The role of a physician participating in the Registry is to submit data according to the Registry’s protocol, to make use, as appropriate, of your patients’ Registry data over time to guide disease management, and to participate where interested in ongoing Registry research projects.

It is recommended that data be submitted to the Registry according to the Recommended Schedule of Assessments found in the Pompe Registry Protocol. Participating physicians and coordinators are requested to submit patient data via the Registry’s Internet-based data collection tool.

In order to obtain routine reports regarding patient status and current information to fulfill data requests, it is important that patient data are submitted on a regular basis. Members of the Pompe Registry staff are available upon request to assist with data collection questions. Physicians may be contacted by Registry staff to answer questions or to clarify information that was submitted to the Registry.