Gaucher Registry

The International Collaborative Gaucher Group (ICGG) Gaucher Registry is the largest cooperative, observational registry on Gaucher disease. By June 2007, data from over 4700 patients with Gaucher disease have been collected from physicians in 56 countries.

The Gaucher Registry was established in 1991 as a longitudinal database tracking outcomes of routine clinical practice and is sponsored by Genzyme Corporation.

The Registry's goal is to significantly contribute to the medical understanding of Gaucher disease and to improve the quality of care for Gaucher patients worldwide through active publication of Registry findings and disease management approaches.

As of January 2006 more than 4500 Gaucher patients in more than 80 countries are treated with Cerezyme.

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 intervention;

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 ERT

All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion in the Registry. Confirmed diagnosis is defined as a documented β-glucocerebrosidase deficiency and/or mutation in the β-glucocerebrosidase gene.

To learn more about the Gaucher Registry or to enroll online, please visit www.gaucherregistry.com

You can also contact your local Genzyme representative or e-mail us for more information on the Gaucher Registry or to order the Gaucher Registry Annual Report.