The Gaucher Registry is the world’s largest cooperative observational study on Gaucher disease. The International Collaborative Gaucher Group (ICGG) established the registry in 1991 as a longitudinal database tracking outcomes of routine clinical practice. As of 2002, over 2,600 patients have enrolled in the registry.

All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion. By enrolling patients in the registry, participating physicians will receive patient-specific reports to monitor disease status and access to information on current treatment guidelines and practice patterns.

The Gaucher Registry maintains its integrity by a commitment to patient privacy and confidentiality, as well as a commitment to the quality of the data. To ensure the most comprehensive data, the Gaucher Registry is open to all patients with Gaucher disease, regardless of treatment modality. The Gaucher Registry is in compliance with HIPAA (Health Insurance Portability and Accountability Act), as well as the EU Privacy Directive.   

To learn more about how to enroll your Gaucher disease patients, visit the Gaucher Registry.