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This is not an exhaustive list of labs, or an endorsement of any one lab. Other testing options can be found at www.concertgenetics.com (free login required) or www.ncbi.nlm.nih.gov/gtr. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites. These listings do not constitute an endorsement by Sanofi Genzyme of information provided by any other organizations. Tests may not be available in all states. Please contact the laboratory to confirm test availability, sample shipping information, and all other logistics.


Websites

Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites. These listings do not constitute an endorsement by Sanofi Genzyme of information provided by any other organizations.

National Gaucher Foundation: https://www.gaucherdisease.org

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/gaucher-disease/

Concert Genetics (free login required): www.concertgenetics.com

Genetic Home Reference: https://ghr.nlm.nih.gov/condition/gaucher-disease


Patient 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. Since its approval, the clinical data has been collected data on over 6,000 patients with Gaucher. All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion. By enrolling patients in the registry, participating physicians have the ability to 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 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 provides insight into Gaucher disease thus supporting the publication of many scientific articles. Each of these publications has helped to increase the understanding of Gaucher disease in areas including natural history, diagnosis, treatment, and management.

For more information on The Gaucher Registry, visit our website at https://www.registrynxt.com/.

 

 

 

 

Last Updated: Mar 13, 2020
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