Last updated on April 2019

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:

Clinical Study Identifier: NCT00196742

Contact Investigators or Research Sites near you

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Investigational Site Number 380002

Bassano del Grappa (VI), Italy
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Investigational Site Number 380002

Bassano Del Grappa (VI), Italy
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Investigational Site Number 840075

Coral Springs, FL United States
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Investigational Site Number 840112

Jacksonville, FL United States
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Investigational Site Number 840027

Indianapolis, IN United States
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Investigational Site Number 840050

Grand Rapids, MI United States
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Investigational Site Number 840016

New Brunswick, NJ United States
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Investigational Site Number 840089

Philadelphia, PA United States
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Investigational Site Number 840034

Philadelphia, PA United States
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Investigational Site Number 840078

Charlottesville, VA United States
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Investigational Site Number 643003

Nizhny Novgorod, Russian Federation
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Investigational Site Number 643002

Saint-Peterburg, Russian Federation
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Investigational Site Number 032002

Ciudad Autónoma de Buenos Aires, Argentina
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Investigational Site Number 153032

Ciudad Autónoma de Buenos Aires, Argentina
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Recruitment Status: Open


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