Read the Fabry Outcome Survey Annual Report 2017.
The Fabry Outcome Survey (FOS) 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.
About the Annual Report
The FOS Annual Report 2016 has been released and includes details of the FOS Steering Committee as well as a summary of patient demographics and the publications that have been developed on the basis of data collected in the registry.
Key highlights from FOS, as of January 2017
- A total of 3112 patients from 133 clinics in 24 countries have been enrolled in FOS. Just over half of all patients are female (56%), and the proportion of children (defined as < 18 years old at FOS entry) is 12%. More than 60% of patients have received treatment with agalsidase alfa at some point during the management of their disease.
- The key contributions of the registry during its first 15 years were detailed in a review in 2016 (Giugliani R et al. A 15-year perspective of the Fabry Outcome Survey. Journal of Inborn Errors of Metabolism and Screening 2016; 4: 1–12).
- Three other manuscripts based on FOS data were published in peer-reviewed journals in 2016, and by June 2017 the total number of FOS publications had increased to 53.
- In 2016, six posters based on information collected in FOS were presented by participating physicians at two international scientific conferences in Europe and North America.
The Annual Report is available here.