Accessing Registry Data

Data provided to the Registry will assist in optimizing the quality of patient care. As a routine service, ICGG physicians will receive summary reports of their own data, as well as aggregate Registry data. All physician and patient information are confidential. If necessary, patient data that are provided in response to data requests from the overall database will be furnished by patient identification numbers only. Your patient data will remain confidential and will not be released to other physicians without your written approval. No data comparisons between individual physician practices will be made.

Access to the overall aggregate database is open to the Gaucher medical community. Physicians interested in publishing or presenting aggregate Registry data should contact the Gaucher Registry staff. These requests will be considered in consultation with an International Review Committee according to the Publication Policy for Data from the ICGG Gaucher Registry. Similarly, analysis proposals should also be submitted for review and approval by the Gaucher Registry Staff and the ICGG Coordinators.

For more detailed information about the data reports available from the Registry and requesting specific information from the database, please refer to the Data Reporting section.