The International Collaborative Group (ICGG) Gaucher Registry

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. The registry is sponsored by Sanofi Genzyme.

  • All patients with a confirmed diagnosis of Gaucher disease, regardless of treatment modality, are eligible for inclusion
  • By enrolling patients in the registry, participating physicians will receive patient-specific reports to monitor disease status

Data from the Gaucher Registry provides insight into Gaucher disease. Publications based on this data have helped increase understanding of Gaucher disease, its natural history, diagnosis, treatment, and management as well as bone disease, pediatric presentation, and genotypes. 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.

Reporting. Collaborating. Advancing. Help to improve the quality of care for patients with Gaucher disease.

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