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Study identifier: NCT00196742 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

Fabry Disease Registry & Pregnancy Sub-registry

Condition: Fabry Disease  ·  Sponsor: Genzyme, a Sanofi Company

PhaseN/A
Planned participants9000
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this 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 primary 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; * To evaluate the long-term safety and effectiveness of Fabrazyme® Fabry Pregnancy Sub-registry: This Sub-registry is a multicenter, international, longitudinal, observational, and voluntary program designed to track pregnancy outcomes for any pregnant woman enrolled in the Fabry Registry, regardless of whether she is receiving disease-specific therapy (such as enzyme replacement therapy with agalsidase beta) and irrespective of the commercial product with which she may be treated. Data from the Sub-registry are also used to fulfill various global regulatory requirements, to support product development/reimbursement, and for other research and non-research-related purposes. No experimental interv…

This description comes directly from the study's public registry record.

Talk to the study team

Trial Transparency  ·  800-633-1610  ·  contact-us@sanofi.com

Fabry Registry HelpLine  ·  617-591-5500

Always discuss trial participation with your own doctor first.

Locations (284)

University of Alabama Birmingham- Nephrology- Site Number : 840018Birmingham, Alabama, United StatesCompleted
University of Alabama Birmingham- Nephrology- Site Number : 840073Birmingham, Alabama, United StatesRecruiting
Phoenix Children's Hospital- Site Number : 840003Phoenix, Arizona, United StatesRecruiting
University of Arizona- Site Number : 840015Tucson, Arizona, United StatesRecruiting
Arkansas Children's Hospital- Site Number : 840109Little Rock, Arkansas, United StatesRecruiting
University of Arkansas for Medical Sciences- Site Number : 840113Little Rock, Arkansas, United StatesRecruiting
University of California at Irvine- Site Number : 840036Irvine, California, United StatesRecruiting
Southern California Permanente Medical Group- Site Number : 840108Los Angeles, California, United StatesRecruiting
USC Health Sciences Center Dept of Genetics- Site Number : 840082Los Angeles, California, United StatesCompleted
University Of California Los Angeles- Site Number : 840088Los Angeles, California, United StatesRecruiting
UCSF Benioff Children's Hospital - Oakland- Site Number : 840029Oakland, California, United StatesCompleted
Children's Hospital of Orange County- Site Number : 840074Orange, California, United StatesRecruiting

+ 272 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT00196742