Access to information is critical to providing 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 Sanofi Genzyme Corporation, 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.
By establishing an MPS I Registry to which physicians contribute clinical data on patients, knowledge is pooled, including parameters on disease progression. Information from the Registry is summarized in reports including graphic summaries of organ volume over time and responses to disease management.
To learn more, visit the MPS I Registry at www.registrynxt.com.
The MPS I Registry program, sponsored and administered by Sanofi Genzyme, is a worldwide database that tracks health-related information for people with MPS I, allowing doctors and health care professionals to understand the disorder.