Accessing Fabry Registry Data

Data provided by participating physicians to the Fabry Registry is designed to help optimize the quality of patient care. Routinely, participating physicians will receive summary reports of their own patient data, as well as de-identified and aggregate Fabry Registry reports. Physician and patient information is maintained as confidential and is only used and disclosed in accordance with the signed patient authorization.

Data that is provided by the Fabry Registry from the overall database in response to data requests will be furnished by identification numbers only in a de-identified format. No physician to physician data comparisons will be made.

Any health care professional interested in querying, publishing or presenting aggregate Fabry Registry data should contact the Fabry Registry. Requests for publishing or presenting Registry data will be considered in consultation with the Fabry Registry Board of Advisors according to the Fabry Registry Publication Policy.

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