Welcome to the 2017 Fabry Outcome Survey (FOS) Annual Report, which provides an overview of FOS as of 5 January 2018. This report includes details of the FOS Steering Committee as well as a summary of patient demographics and the publications that have been developed using the data collected in the registry. FOS (ClinicalTrials.gov identifier: NCT03289065) is a large, global, multicentre, observational registry, sponsored by Shire, for patients with Fabry disease. The registry was established in 2001 with the aim of collecting real-world data on the long-term safety and effectiveness of enzyme replacement therapy (ERT) with agalsidase alfa and the natural history of the disease. FOS became a disease registry during 2017 and is now enrolling any patient with Fabry disease, including those who have received an approved treatment for Fabry disease other than agalsidase alfa.
Read the full report here