Fabry Registry

Creating knowledge on Fabry disease

The Fabry Registry, sponsored by Sanofi 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, 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.

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 to the Fabry community

The Fabry Registry provides important information on a disease that affects a small patient population. Management guidelines and publications from the Fabry Registry may contribute to earlier diagnosis.

Confidentiality

Confidentiality and patient privacy are of primary concern to the Fabry Registry. All patient and physician information submitted to the Fabry Registry is maintained as confidential.

Contact the Fabry Registry

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

 

Fabry Registry
Sanofi Genzyme Corporation
500 Kendall St
Cambridge, MA 02142

Telephone:
800-745-4447, x15500
617-591-5500
Email: Contact Us