Ongoing Monitoring of Gaucher Disease

Since Gaucher disease is a lifelong, progressive disease, Gaucher patients should regularly consult with their physicians in order to monitor their signs and symptoms over time. Since Gaucher disease progresses in different ways and in varying rates for every individual, it can be a challenge to measure. In order to help physicians assess a patient, ongoing monitoring guidelines of Gaucher disease have been established.

These guidelines were developed by a group known as the International Collaborative Gaucher Group (ICGG), a team of doctors from around the world who manage Gaucher patients and participate in the Genzyme-sponsored ICGG Gaucher Registry. The Registry, sponsored by Genzyme, is the largest, ongoing, longitudinal, international database on Gaucher disease. The ICGG developed the monitoring guidelines for Gaucher disease using anonymous clinical data from the Gaucher Registry.

For more information visit The Gaucher Registry section of this website.

Ongoing monitoring of Gaucher disease may include the following tests, based on your physician’s recommendations and your individual symptoms.

Bone involvement 
Liver and/or spleen
Quality of Life

Did You Know?

Gaucher disease was first described in 1882 by French physician, Philippe Charles Ernest Gaucher, after he evaluated a deceased 32-year-old woman with an enlarged spleen, one of the disorder's distinguishing signs.

Gaucher Registry

For more than two decades, the Gaucher Registry has been a global resource to the medical and patient communities, helping to improve outcomes in patients with Gaucher disease. Learn more about participating in the Gaucher Registry »