A web-based MPS VI registry has been established by The Women's and Children's Hospital in Adelaide and BioMarin Pharmaceutical, Inc.
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The registry is designed to collect and to provide information to doctors, researchers and patients about the prevalence, natural progression, and range and severity of symptoms in MPS VI. Interested patients can enrol in the registry at https://www.mpsvi.org/Registry/index.cfm See more details in our MPS VI page under MPS Diseases..