The Gaucher Registry

The Gaucher Registry

Help Physicians Better Understand Gaucher Disease by Participating in the Gaucher Registry.

Are you looking for a way to contribute first-hand to a larger goal that may help you and other people living with Gaucher disease? Ask your doctor about participating in the Gaucher Registry.

The International Collaborative Gaucher Group (ICGG) Gaucher Registry is the largest cooperative, observational registry on Gaucher disease. Many medical professionals agree that since Gaucher disease is rare, accurate and complete information on the disease is especially important. The Gaucher Registry was established in order to better understand the natural history and progression of Gaucher disease.

Through the Gaucher Registry, healthcare providers and disease specialists can share clinical information about Gaucher disease. This may ultimately contribute to earlier diagnosis, earlier intervention, and better disease management for you and other people living with Gaucher disease.

What does the Gaucher Registry do?

In addition to helping understand the natural history progression of Gaucher disease, the Gaucher Registry is designed to help physicians understand the long-term effects of treatment. The Gaucher Registry is designed ultimately to provide the Gaucher community with information about the Gaucher disease population around the world.

The Gaucher Registry is a program sponsored by Sanofi Genzyme Corporation and is overseen by an independent group of physicians the ICGG Coordinators, with experience in researching and treating people with Gaucher disease.The ICGG Coordinators help maintain the scientific integrity of the Gaucher Registry.

Benefits of the Gaucher Registry for You

In addition to helping physicians better understand Gaucher disease, the Registry can also benefit you.

For instance, it can help you and your physician to monitor your disease, whether or not you are currently on treatment. When you are enrolled in the Registry, your physician can produce a Patient Case Report every time you have an appointment. This report uses charts, graphs, and text to show how you are progressing on important measures, including:

  • Your bones
  • Your blood
  • Your liver and spleen
  • Your quality of life

The report contains an overview of your health status as it relates to Gaucher disease. Your physician can review it with you to give you a picture of how your health progresses over time. Curious about what a Patient Case Report looks like? Download a sample PCR here (PDF, English) >>

Take an Active Role

When you take an active role in your health care, you feel more in control. Talking to your doctor is an important first step. Here are some ways you can use the Registry to keep the lines of communication open:

  • Ask your physician if he or she is enrolled in the Gaucher Registry
  • Let your physician know you are interested in participating in the Gaucher Registry
  • Ask you physician or nurse to share your Patient Case Report with you at your next visit

Your Privacy is Protected

Patient privacy is a top concern for the Gaucher Registry. Information about you can only be submitted following your written authorization. You will not be identified by name, as patient names are not collected by the Registry. Instead, all enrolled patients are randomly assigned an identification number. Only your physician will know what number is assigned to you.

Any information that would identify you as a patient of your physician is also kept confidential.

All information in the Registry is collected in a way that prevents the identification of specific patients.

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