I am pleased to introduce the final Fabry Outcome Survey (FOS) report for patients and caregivers, which is based on data collected within FOS from 5 October 2001 to 30 September 2022. The aim of this registry, funded by Takeda, was to collect information on patients with Fabry disease. Since initiation in 2001 by Shire (now part of Takeda), FOS has collected a large amount of information on the clinical symptoms, natural progression and treatment outcomes of patients with Fabry disease. As of September 2022, FOS contained data available for analyses from 4480 patients across 24 countries worldwide. After 21 years of operation, FOS has now fulfilled its regulatory objectives, and database closure was completed in September 2022.
The data collected by FOS over the past two decades have contributed vastly to the better understanding of Fabry disease pathophysiology and management; in total, 61 articles based on FOS data have been published in scientific journals. Registry data have also informed several national, European and international guideline and recommendation documents for the management of Fabry disease.
The support and contributions from patients and their caregivers over the past 21 years have an immeasurable value and, on behalf of the FOS Steering Committee, I would like to thank everyone who was involved in the registry over the years. We hope that insights into the disease stemming from these contributions will continue to lead to improvements in patient care in the future.
Mary Pavlou
Patient organization representative on the FOS Steering Committee
Patient organization representative on the FOS Steering Committee