The Fabry Registry

A Collective Resource to Optimize Outcomes

^{A resource for physicians}

The Fabry Registry is a global outcomes assessment and disease management program that compiles patient outcomes data from routine clinical practice to provide the medical community with resources to help optimize patient care by:

• Facilitating significant research publications.
• Encouraging collaboration and shared expertise with your colleagues.
• Enabling the clinical practice of evidence-based medicine.
• Developing individualized care plans based on benchmark comparisons of similar patients.

^{A resource for the entire Fabry community}

Through the Fabry Registry, the Fabry community has access to an important resource on a disease that affects a small patient population. Management guidelines and publications from the Fabry Registry may contribute to:

• Earlier diagnosis.
• Earlier intervention.
• Enhanced clinical evaluation and monitoring.
• Defining the therapeutic goals of treatment.
• Improved quality of care.
• Optimal patient outcomes.

^{Open Database}

Explore issues, evaluate trends, and generate peer-reviewed publications through the Fabry Registry’s open database. Physicians may publish their own data or on the Registry population as a whole (aggregate data analyses).

• Request individualized patient reports and informative clinical summaries to monitor disease status.
• Build a decision support system by exchanging aggregate clinical data among physicians to facilitate clinical decision-making.
• Access new information on current treatment guidelines and practice patterns.
• Tap into an international “virtual practice” of patients with Fabry disease.

^{Confidential in Nature}

The Fabry Registry complies with applicable national privacy regulations and other state and local laws relating to medical information. All patient and physician information submitted to the Fabry Registry is maintained as confidential.

• Patients are referenced by Registry ID number only.
• Patients must authorize release of their clinical data.
• No site-to-site data comparisons are made.

^{Contact the Fabry Registry}

In the United States
617- 591-7024 or
800-745-4447, ext. 17024

In Europe
+31 (0) 35 699 1232

Or visit www.fabryregistry.com