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The Gaucher Registry (sponsored by Sanofi Genzyme) 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. Since its approval, the registry has collected data on over 6,000 Gaucher patients. All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion. By enrolling patients in the registry, participating physicians receive patient-specific reports to monitor disease status and access to information on current treatment guidelines and practice patterns.

Since 1991, enrollment in the Gaucher Registry has grown steadily with increased numbers of physicians submitting data on more patients from a larger number of countries around the world. The participation of so many concerned physicians, healthcare advocates and patients has enabled the Gaucher Registry to help change the perspective and management of Gaucher disease.

Data from the Gaucher Registry has provided insight into Gaucher disease by supporting many published manuscripts. Each of these publications has helped to increase the understanding of Gaucher disease, its natural history, diagnosis, treatment, and management as well as bone disease, pediatrics, and genotypes.

For more information on The Gaucher Registry, visit our website at


Last Updated: Oct 17, 2018