Fabry Disease Registry – Global Data Collection and Sharing of the Variability, Progression and Natural History of Fabry Disease

Summary

The Fabry Registry program was started worldwide in 2000 for patients with Fabry disease to help health care providers better understand that disease. Since there is no known cure for Fabry disease, it is expected that the Fabry Registry will continue for a number of years. Fabry disease is a rare genetic disease that cannot be cured at this time. People with Fabry disease can participate in the Registry, regardless of whether they are receiving any treatment. The Registry is sponsored and run by Sanofi Genzyme.

The main purpose of the Registry is to collect health information to better understand rare diseases.

Eligibility

Currently recruiting participants: Yes

Eligible ages: 0 to 100

Inclusion criteria:

Patients with a diagnosis of Fabry disease and are willing and able to provide informed consent.

Exclusion criteria:

There are no exclusion criteria for this study.

Participate

This study is not currently accepting expressions of interest via the website. Please see contact information below.

Additional information

Contact information

https://www.fabryregistry.com

Principal investigator:

Aneal Khan

Clinical trial:

No

REB-ID:

HREBA.CHC-22-0021