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The goal of the MPS I Registry is to collect clinical data on people with MPS I disease around the world in an effort to help healthcare professionals better understand MPS I disease and its management. Specifically, the Registry tracks information on patient demographics, disease characteristics, treatment goals and outcomes.

Within your individual practice, the Registry’s patient case report (PCR) section offers a valuable tool that allows you to monitor each of your patient’s disease progress and response to therapy. The reports graphically summarize the changes in clinical parameters such as organ volume over time and responses to disease management.

For more information on The MPS I Registry, visit our website at


Last Updated: Oct 17, 2018