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Fabry Disease Registry & Pregnancy Sub-registry

Recruitingn/aAges any - anyAllGenzyme, a Sanofi Company
NCT00196742 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit 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 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

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📋 Eligibility rules (as published)
Inclusion Criteria * Fabry Registry: 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. * Fabry Pregnancy Sub-registry: * Eligible women must: * be enrolled in the Fabry Registry. * be pregnant, or have been pregnant with appropriate medical documentation available. * provide a signed informed consent and authorization form(s) to participate in the Sub-Registry prior to any Sub-Registry-related data collection being performed. Exclusion Criteria Fabry Registry: There are no exclusion criteria. Fabry Pregnancy Sub-registry: There are no exclusion criteria.
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What it tests

  • Not listed
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Where

284 sites
University Of Alabama Birmingham- Nephrology- Site Number : 840018
Birmingham, United States
University Of Alabama Birmingham- Nephrology- Site Number : 840073
Birmingham, United States
Phoenix Children's Hospital- Site Number : 840003
Phoenix, United States
University of Arizona- Site Number : 840015
Tucson, United States
Arkansas Children's Hospital- Site Number : 840109
Little Rock, United States
University of Arkansas for Medical Sciences- Site Number : 840113
Little Rock, United States
Southern California Permanente Medical Group- Site Number : 840108
Los Angeles, United States
Usc Health Sciences Center Dept Of Genetics- Site Number : 840082
Los Angeles, United States

…and 276 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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