Help doctors better understand MPS I disease by participating in the MPS I Registry

The MPS I Registry is an ongoing, observational database that is designed to help doctors understand the natural history progression of MPS I disease. Since MPS I disease is rare, accurate and complete information on the disease is important. Through the MPS I Registry, healthcare providers and disease specialists can share clinical information about MPS I disease.

Patient asking about how to participate in the MPS I registry

What does the MPS I Registry do?

  • Helps study the natural history of MPS I disease
  • Helps doctors understand the long-term effects of MPS I

Who can participate and how?

  • All people who have MPS I disease
  • Doctors can enroll patients who sign an authorization form to participate in the MPS I Registry
  • A patient may decline to participate or withdraw consent at any time

Why should you participate?

  • When a patient joins the MPS I Registry, his/her medical data is combined with that of other participants to analyze the trends and answer specific concerns about MPS I disease
  • This information may contribute to a better understanding of MPS I disease and thereby may translate into better management of the disease for all patients
  • Patient information is kept confidential by the registry

How does it work?

  • During regular doctor visits, the medical information collected (such as information on the patient's liver, spleen, blood, bones, and quality of life) would be submitted to the MPS I Registry
  • There is no end date for the MPS I Registry. Patients can participate in the MPS I Registry for as long as they and their doctor would like to
  • Long-term participation in the MPS I Registry will help make sure that knowledge about MPS I disease keeps growing

The MPS I Registry team

  • The MPS I Registry is overseen by an independent group of doctors, the MPS I Board of Advisors, with experience in researching and managing people with MPS I disease
  • The MPS I Board of Advisors help maintain the scientific integrity of the MPS I Registry
  • The MPS I Registry is sponsored, administered, and led by Sanofi exclusively

To find out more about the MPS I Registry, visit

MPS I, mucopolysaccharidosis type I.