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:
- In Asia-Pacific - Vivian Liu, +65-6431-2548, [email protected]
- In Europe - +31-35-699-1232, [email protected]
- In Latin America - +617-591-5500, [email protected]
- In North America - +617-591-5500, [email protected]
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