Latest Hunter Outcome Survey report published
Hunter Outcome Survey (HOS) is a large, global, multicentre, longitudinal, observational registry, sponsored by Shire, for patients with mucopolysaccharidosis type II (MPS II; Hunter syndrome). The registry was established in 2005 with the aim of collecting real-world data on the long-term safety and effectiveness of enzyme replacement therapy (ERT) with idursulfase and the clinical presentation and progression of the disease.
About the Annual Report
This report includes details of the HOS Steering Committee as well as a summary of patient demographics and the publications that have been developed based on the data collected in the registry.
Key highlights from HOS, as of January 2017
- A total of 1195 patients from 133 centres in 33 countries have been enrolled in HOS.
- The majority of patients (86%) have been followed prospectively (these individuals were alive at HOS entry), and 14% are historical patients (they had died before enrolment). Most individuals (82%) have received at least one intravenous infusion of idursulfase.
- Three new manuscripts based on HOS data have been published since the start of 2016, bringing the total number of HOS manuscripts published in peer-reviewed journals to 17.
- In 2016, eight posters and one oral presentation, based on information collected in HOS, were presented by participating physicians at four international scientific conferences in Europe and North America.