Last updated on April 2019

Fabry Disease Registry

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Brief description of study

The Fabry Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Fabry disease, irrespective of treatment status. 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 Fabry disease, including heterozygous females with the disease;
• To assist the Fabry medical community with the development of recommendations for monitoring patients and reports on patient outcomes to help optimize patient care;
• To characterize and describe the Fabry population as a whole; and
• To evaluate the long-term safety and effectiveness of Fabrazyme

Detailed Study Description

The Fabry Registry is an international program; in addition to the central contact information provided under the "Location" heading, patients may contact:

• In Asia-Pacific - Vivian Liu, +65-6431-2548, Vivian.liu@genzyme.com
• In Europe - +31-35-699-1232, europe@FabryRegistry.com
• In Latin America - +617-591-5500, help@FabryRegistry.com
• In North America - +617-591-5500, help@FabryRegistry.com