Fabry Registry

The Fabry Registry is a program sponsored and administered by Sanofi Genzyme, created to help increase the understanding of Fabry disease.  The Fabry Registry is overseen by a board of advisors which consists of a group of physicians with experience in researching and treating people with Fabry disease. This board of advisors helps to maintain the scientific integrity of the Fabry Registry.

Who can participate?

All people who have Fabry disease are eligible to participate. Doctors can enroll patients who sign an authorization form to participate in the Fabry Registry. A patient may decline to participate or withdraw consent at any time.

What does the Fabry Registry do?

Because Fabry disease affects a small number of people, it can be difficult to collect information about how the disease progresses. The Fabry Registry is a global tool that collects this critical information so that physicians and the overall Fabry community can continue to increase their knowledge on the disease. Through the Registry, physicians who are managing a least one patient with Fabry disease can submit clinical information about their patients. Clinical information provided by participating physicians to the Fabry Registry helps collect data on a variety of important areas in Fabry disease, including:

  1. Disease progression in males and females

Data collected through the Fabry Registry and reports published using that data may be reported to regulatory authorities for a variety of purposes.

What does participation involve?

Patients receive the same routine care by their doctor regardless of participation in the Fabry Registry. At regular doctor visits, the medical information the doctor collects (such as information on kidneys, heart, pain, hearing, quality of life, etc.) will be submitted to the Fabry Registry.

Will patient information be kept private?

Information submitted to the Registries will be maintained as confidential in accordance with applicable national privacy regulations and other state and local laws related to medical information.

Contact the Fabry Registry

For more information on the Fabry Registry, please visit www.fabryregistry.com or use the following contact information.

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

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