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
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
Additional information
Contact information
Principal investigator:
Aneal Khan
Clinical trial:
No
REB-ID:
HREBA.CHC-22-0021