Data Reporting

One of the most important benefits of participation in the Pompe Registry is the availability of periodic reports to participating physicians and other health care professionals. The objective of these reports is to provide longitudinal data, either on the Registry population as a whole, by site, or by individual patient, in order to assess a patient’s overall clinical course and to help optimize patient care.

Some of the standard formats used to compile and summarize Registry data will include:

• Patient Profile Reports provide individualized clinical outcomes assessments that enable the physician, nurse, and genetic counselor to monitor changes in the patient's disease progression. The reports graphically summarize the changes in clinical parameters over time.
• Data Request Reports, including patient comparative reports, fulfill requests for specific information through customized analyses. Reports are provided to physicians as an additional service to enhance clinical decision making.
• Annual Summary Reports provide an annual summary of results from the overall Registry database.
• Country-specific and Physician-specific Reports are available upon your request and provide feedback on patient results based on the data physicians have submitted. The reports allow for comparison of specific subgroups of patients to patients worldwide.
• Clinical Summary Reports are issued periodically on topic-specific findings and information on key areas of clinical interest.
• Peer-reviewed Publications (abstracts and manuscripts) authored by participating physicians.
• Additional reports are available through the electronic data collection tool. These include an Audit Report and Query Report. Reports may also be created by using the EDC Data Download Tool.

If you would like to receive a copy of any of the listed reports or would like to request data from the Registry database, please call the Pompe Registry at 800-745-4447, x15500 or 617-591-5500 (United States) or +31-35-699-1232 (Europe) or email us.