Fabry Registry

The Fabry Registry, a Genzyme sponsored program, has been established in order to better understand the variability and progression of Fabry disease in the population as a whole and in women, and to monitor and evaluate the long-term effects of Fabrazyme^® (agalsidase beta). The Registry will also monitor the effect of Fabrazyme on pregnant women and their offspring, and determine if Fabrazyme is excreted in breast milk. Patients should be encouraged to participate and advised that their participation is voluntary and may involve long-term follow-up. For more information visit www.fabryregistry.com or call (800) 745-4447, x15500.

^{Open Database}

The Fabry Registry’s open database helps optimize patient outcomes and increase the understanding of Fabry disease by:

• Providing individualized patient reports and informative clinical summaries to submitting physicians
• Encouraging physician collaboration and shared expertise
• Facilitating publications

Physicians may publish analyses on aggregate Registry data.

^{Independent Board of Advisors}

The Fabry Registry is guided by an independent group of physicians with extensive experience in managing patients with Fabry disease.

^{Registry Integrity}

The Fabry Registry maintains its integrity by a commitment to patient privacy and confidentiality, as well as a commitment to the quality of the data. To promote comprehensive data collection, the Fabry Registry is open to all patients with Fabry disease, regardless of treatment modality.

^{Confidentiality Assurance}

Patient - and physician-identifiable information submitted to the Fabry Registry is maintained as confidential in accordance with applicable national privacy regulations and other state and local laws related to medical information.

^{Dedicated Registry Team}

The Fabry Registry team is comprised of experienced healthcare professionals committed to the highest standards of excellence and ethics.

^{How to get started}

All physicians currently managing a patient with Fabry disease are eligible to enroll in the Fabry Registry. Get started by calling 617-591-5500 or 800-745-4447, ext. 15500, or visit the Fabry Registry online.