Fabry Registry

Creating knowledge on Fabry disease

The Fabry Registry, sponsored by Genzyme, is a global resource dedicated to improving the understanding of the variability and progression of Fabry disease.

The Fabry Registry works with physicians to compile patient outcomes data from routine clinical practice to provide the medical community with resources to:

  • Facilitate significant research publications
  • Encourage collaboration and shared expertise with your colleagues
  • Enable the clinical practice of evidence-based medicine
  • Develop individualized care plans based on benchmark comparisons of similar patients

Fabry Registry objectives

The Fabry Registry is an ongoing, observational database that tracks the natural history and outcomes of patients with Fabry disease. All Fabry disease patients are eligible for enrollment irrespective of their treatment status, and all physicians managing patients with Fabry disease are encouraged to participate in the Fabry Registry.

The Fabry Registry provides a repository that allows for the exchange of information and aggregate data to facilitate clinical decision making and data reports, and serves as a vehicle for collaborative studies.

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 disease 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 disease population as a whole; and
  • To evaluate the long-term safety and effectiveness of ERT.

Role of participating physicians

Participating physicians are requested to submit participating patients’ data on a regular basis. It is recommended that data be submitted to the Fabry Registry according to the Recommended Schedule of Assessments found in the Fabry Registry Protocol. Fabry Registry Staff are available upon request to assist with any data collection questions.

Benefits of participation

The Fabry Registry has several informative features that offer unique benefits to participating physicians. Participating physicians have access to the Fabry Registry’s database.

Physicians' contributions of patient data to the Fabry Registry database benefit all other Fabry Registry participants, since data are pooled to study trends or address specific questions. As a participating physician, you are encouraged to submit queries for specific information from the database to facilitate the management of your Fabry patients. The Registry allows physicians to:

  • Request individualized patient reports and informative clinical summaries to help monitor their patient’s disease status
  • Provide a repository for the exchange of aggregate clinical data among physicians to facilitate clinical decision-making
  • Access information on current treatment guidelines and practice patterns

Available reports

There are several Fabry Registry-specific reports available to participating physicians. These reports provide important clinical summaries of individual patients as well as analytical summaries of the overall Registry database. Please visit www.fabryregistry.com to learn more.

Benefits to the Fabry community

Through the Fabry Registry, the Fabry community has access to important resources on a disease that affects a small patient population. Management guidelines and publications from the Fabry Registry may contribute to earlier diagnosis and intervention.

Confidentiality

Confidentiality and patient privacy are of primary concern to the Fabry Registry. The 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 to the Registry
  • No site-to-site data comparisons are made

Contact the Fabry Registry

For more information on the Fabry Registry, please visit the Registry website or use the following contact information.

In the United States and non-European countries:

Fabry Registry
Genzyme Corporation
500 Kendall Street
Cambridge, MA 02142
USA

Telephone:
800-745-4447, x15500
617-591-5500
Email: contact us

Europe

Fabry Registry
Genzyme Europe BV
Gooimeer 10
NL 1411 DD Naarden
The Netherlands

Telephone: +31-35-699-1232
Fax: +31-35-699-8688
Email: Europe@fabryregistry.com

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