Fabry Disease Registry



Status:Recruiting
Conditions:Hematology, Metabolic
Therapuetic Areas:Hematology, Pharmacology / Toxicology
Healthy:No
Age Range:Any
Updated:3/15/2019
Start Date:July 31, 2001
End Date:July 30, 2021
Contact:Trial Transparency email recommended (Toll free number for US & Canada)
Email:Contact-Us@sanofi.com
Phone:800-633-1610

Use our guide to learn which trials are right for you!

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®

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

Inclusion Criteria All patients with a confirmed diagnosis of Fabry disease who have signed
the informed consent and patient authorization form(s) are eligible for inclusion.
Confirmed diagnosis is defined as a documented deficiency in plasma or leukocyte αGAL
(alpha-galactosidase) enzyme activity and/or mutation(s) in the gene coding for αGAL.

Exclusion Criteria There are no exclusion criteria in this Registry. Patients are allowed
to participate in other clinical studies and may be receiving different therapies to treat
their disease; however, enrollment in other clinical studies should be noted on the
Registry case report forms (CRFs).
We found this trial at
58
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Sacramento, CA
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Ann Arbor, MI
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Birmingham, AL
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Boston, MA
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Buenos Aires,
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Camden, NJ
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Charlotte, North Carolina 28207
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Charlotte, NC
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Charlottesville, VA
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Chicago, IL
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Cincinnati, OH
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Cleveland, OH
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Columbus, OH
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Columibia, MO
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Coral Springs, FL
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Dallas, TX
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Danville, PA
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Decatur, GA
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Dublin, OH
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Durham, NC
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Fairfax, VA
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Fort Worth, TX
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Gainesville, FL
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Grand Rapids, MI
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Greenville, South Carolina 29605
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Greenville, SC
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Hackensack, NJ
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Helena, MT
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Hershey, PA
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Indianapolis, IN
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Iowa City, IA
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Jacksonville, FL
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Little Rock, AR
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Manhasset, NY
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Minneapolis, MN
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Morristown, NJ
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Nashville, TN
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New Brunswick, New Jersey 08901
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New Brunswick, NJ
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New Haven, CT
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Norfolk, VA
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Omaha, NE
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Paterson, NJ
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Portland, ME
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Providence, RI
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Rochester, NY
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Saint Louis, MO
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Springfield, Massachusetts 01199
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Springfield, MA
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Syracuse, NY
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Tampa, FL
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Valhalla, NY
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Washington,
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