Organization and technical aspects of FOS – the Fabry Outcome Survey

Excerpt

As a comprehensive database on the efficacy and safety of enzyme replacement therapy with agalsidase alfa, FOS – the Fabry Outcome Survey – is providing important insights into treatment outcomes, in addition to increasing our understanding of the natural history of Fabry disease. The success of FOS not only depends on the quantity of information collected, but also on the quality control processes that ensure the relevance and accuracy of the data submitted. Importantly, decision making concerning data collection, hypothesis testing and dissemination of information based on data analyses is controlled by participating physicians who are elected to the various National and International Boards and to specific scientific Working Groups. Hence, FOS is designed for the ultimate benefit of patients whilst remaining a practical tool for physicians and other health workers involved in caring for affected individuals and their families.