The MPS I Registry

Access to information is critical to providing the best care to patients. However, information on MPS I disease is limited because of its rarity. There is a global resource dedicated to improving the understanding of MPS I disease - the MPS I Registry. Sponsored by BioMarin/Genzyme LLC, the MPS I Registry is an ongoing, observational database that tracks natural history and outcomes of patients.

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 can help motivate patients to comply with long-term therapy.

To learn more, visit MPSIRegistry.com.