Clinical Trial: Fabry Disease Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational

Official Title: Fabry Disease Registry

Brief Summary:

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 Summary:

The Fabry Registry is an international program; in addition to the central contact information provided under the "Location" heading, patients may contact:


Sponsor: Genzyme, a Sanofi Company

Current Primary Outcome: To evaluate the long-term safety and effectiveness of Fabrazyme® [ Time Frame: 15 years ]

Original Primary Outcome:

Current Secondary Outcome:

Original Secondary Outcome:

Information By: Sanofi

Dates:
Date Received: September 13, 2005
Date Started: July 2001
Date Completion: July 2021
Last Updated: March 16, 2017
Last Verified: March 2017