Hunter Outcome Survey: A Global Multi-Center Long-Term Observational Registry of Patients with Hunter Syndrome
Brief description of study
The purpose of the Hunter Outcome Survey (HOS) is to monitor the long-term safety and effectiveness of enzyme replacement therapy (ERT) with Elaprase in patients with Hunter syndrome and to gather more information about the disease itself regardless of whether patients are receiving treatment or not. There are many unanswered questions concerning Hunter syndrome and the progression of the disease. The HOS provides a platform for the collection of long-term clinical data from patients affected by the disease in order to understand the disease better and to hopefully aid in improving the way affected patients are cared for.
Clinical Study Identifier: 06-916
ClinicalTrials.gov Identifier: NCT03292887
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