Hunter Outcome Survey

The latest Hunter Outcome Survey (HOS) for 2020 has been released. We hope that this report will help patients and caregivers who are participating or interested in HOS to improve their understanding of how it works and what has been achieved so far.


Please note that this report is for information purposes only; it should not be used for diagnosing or treating a health problem or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice.



What is the Hunter Outcome Survey (HOS)?


HOS is a large disease registry that collects information on patients with MPS II Hunter and is sponsored by the pharmaceutical company Takeda. During the lifetime of the registry (started in 2005), the symptoms and progression of MPS II, along with the outcomes for patients who are untreated or treated with the drug idursulfase, have been studied in detail.


What does the survey do?


By collecting this information, the registry aims to improve our understanding of MPS II, helping healthcare professionals to provide the best care for their patients.


Key findings of the report


As of January 2021, 1349 patients were enrolled in the HOS. 99% of these patients are male. The most common age category is patients under six years old (458 patients).


The patients enrolled came from 34 countries with the most popular country being the USA.


48% of patients in the HOS have undergone surgery for the removal of adenoids. More than 8 out of 10 patients have been treated with idursulfase at any time.


More information


If you would like to read the full HOS report, please click here.