The Gaucher Registry

The International Collaborative Gaucher Group (ICGG) Gaucher Registry is, the largest ongoing longitudinal international database that tracks demographic and clinical outcome data from patients with Gaucher disease. The Gaucher Registry, sponsored by Genzyme, was established in 1991.

The Registry includes more than 6,000 patients and is open to all patients worldwide, irrespective of treatment status. Scientific direction is provided to the Registry by an independent group of international physicians, the ICGG Regional Coordinators.[1]

The Gaucher Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Gaucher disease. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient’s treating physician.

The objectives of the Registry are:

  • To enhance the understanding of the variability, progression, and natural history of Gaucher disease with the ultimate goal of better guiding and assessing therapeutic interventions;
  • To provide the Gaucher medical community with recommendations for monitoring patients and to provide reports on patient outcomes to help optimize patient care; and
  • To evaluate the long-term effectiveness of enzyme replacement therapy (ERT).

Publications have been generated on patient demographics, disease characteristics, outcomes, guidelines on diagnosis, initial assessment and ongoing monitoring.

The Registry’s patient case reports offer a valuable tool that enables participating physicians to monitor response to therapy and disease progression. The reports graphically summarize the changes in clinical parameters such as bone involvement or organ volume changes over time. Patient case reports can help motivate patients to comply with their treatment plan and establish a foundation for their long-term care.

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1. The Gaucher Registry. Data on File.