Data Reporting

Data Request Reports
Clinical Summary Reports
Peer-reviewed Publications
Patient Case Reports (PCRs)
Patient SF-36® (QOL) and BPI-9 Reports
Annual Summary Reports
Country-specific and Physician-specific Reports
Site Status Reports

One of the most important benefits of participation in the Fabry Registry is the provision of periodic reports to participating physicians and other health care professionals. The objective of these reports is to provide longitudinal data, either on the Fabry Registry population as a whole, by site, or by the physician’s individual patients, 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 Fabry Registry data will include:

Data Request Reports
These include de-identified patient comparative reports, fulfill requests for specific information through customized analyses. Reports are provided to physicians to help assist in clinical decision making.

Download Data Request Form

• Download Completed Fabry Registry Data Requests

Clinical Summary Reports
These are issued periodically on topic-specific findings and information on key areas of clinical interest.

Peer-reviewed Publications
These publications are authored by participating physicians.

Patient Case Reports (PCRs)
These provide individualized patient clinical outcomes assessment reports. PCRs enable the patient’s physician, nurse, and genetic counselor to monitor changes in his/her patient's disease progression. The reports graphically summarize the changes in clinical parameters over time.

• Download sample PCR (PDF)

Patient SF-36^® (QOL) and BPI-9 Reports
These provide individualized reports on pain and fundamental health and well-being. Please refer to the Quality of Life section for more information about the QOL Reports.

Annual Summary Reports
These provide an annual summary of aggregate and de-identified results from the overall Fabry Registry database.

• Download Annual Summary Report

Country-specific and Physician-specific Reports
These provides de-identified and aggregate feedback on patient results based on the data physicians have submitted. The reports allow for comparison of specific subgroups of patients to patients worldwide.

Site Status Reports
These review data submission activity levels and completeness for each site.

If you would like to receive a copy of any of the listed reports or would like to request data from the Fabry Registry database, please call the Fabry Registry.