Fabry Registry

The Fabry Registry is the largest outcomes assessment program in the world that monitors patients with Fabry disease. By the end of 2006, data from over 2200 patients with Fabry disease have been collected by 191 physicians.

ALL Fabry patients are eligible for enrollment irrespective of their enzyme replacement therapy (ERT) status, and all physicians managing patients with Fabry disease are encouraged to participate in the Fabry Registry.

The Fabry Registry started in 2001 and is an ongoing, observational database that tracks the natural history and outcomes of patients with Fabry disease. The Registry is sponsored by Genzyme Corporation and an independent board of advisors provides scientific oversight and direction to the Fabry Registry.

Physicians are encouraged to collaborate, share observations, and generate hypotheses for evaluation, as well as assist in the collection of clinical data in an effort to guide and assess future therapeutic interventions.

The primary objectives of the Fabry 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^® (agalsidase beta)

To learn more about the Fabry Registry or to enroll online, please visit www.fabryregistry.com

You can also contact your local Genzyme representative or e-mail us for more information on the Fabry Registry or to order the Fabry Registry Annual Report.