MPS I REGISTRY
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.
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