Data Reporting

One of the most important benefits of participation in the Gaucher Registry is the provision of periodic reports to the ICGG 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 include:

Patient Case Reports (PCRs) provide individualized clinical outcomes assessment reports. PCRs enable the physician, nurse, and genetic counselor to monitor the patient's response to ERT or changes in the patient's disease if not receiving ERT. The reports graphically summarize the changes in clinical parameters over time. The data contained within the report include the following information:

• Demographics
• Height and weight
• ERT history (if on therapy)
• Hematologic changes
• Visceral organ volume changes
• Skeletal involvement
• Quality of Life

Download Sample PCR

Data Request Reports, including patient comparative reports, fulfill requests for specific information through customized analyses. Reports are provided to ICGG physicians as an additional service to enhance clinical decision making.

To request information from the Registry, please complete the Data Request Form (PDF) and fax or mail it to the Gaucher Registry.

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

Peer-reviewed Publications authored by ICGG physicians and other health care providers.

Gaucher Registry Annual Report provides an annual status of 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.

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

To receive a copy of any of the listed reports, please contact the Gaucher Registry staff.