Last updated on September 2017

Fabry Disease Registry


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

Clinical Study Identifier: NCT00196742

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Sacramento, CA United States
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Morristown, NJ United States
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Parkville, Australia
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