The MPS I Registry
Help physicians better understand MPS I Disease by participating in the MPS I Registry
The MPS I Registry is an ongoing, observational database on MPS I disease. Many medical professionals agree that since MPS I disease is rare, accurate and complete information on the disease is especially important. The MPS I Registry was established in order to better understand the natural history and progression of MPS I disease.
Through the MPS I Registry, healthcare providers and disease specialists can share clinical information about MPS I disease. This may help contribute to a better understanding of MPS I disease.
Who can participate?
All people who have MPS I disease are eligible to participate. 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.
What does the MPS I Registry do?
In addition to helping understand the natural history progression of MPS I disease, the MPS I Registry is designed to help physicians understand the long-term effects of MPS I. The MPS I Registry is designed ultimately to provide the MPS I community with information about the MPS I disease population around the world.
Data collected through the Registry and reports published using that data may be reported to regulatory authorities.
The MPS I Registry is a program sponsored by BioMarin/Genzyme and administered by Genzyme Corporation. The MPS I Registry is overseen by an independent group of physicians, 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.
How does it work?
Patients receive the same care from their doctor regardless of participation in the MPS I Registry. During regular doctor visits, the medical information they collect (such as information on the patient's liver, spleen, blood, bones, quality of life, etc.) 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 Registry will help make sure that the knowledge about MPS I disease keeps growing.
Why should patients participate?
When patients participate in the MPS I Registry, their medical information is pooled with other participants' and is used to assist physicians in studying trends and addressing specific questions about MPS I disease. This information may contribute to a better understanding of MPS I disease.
Is patient information kept private?
Information that a doctor submits to the MPS I Registry is referenced by patient number and initials, and not by name. Only the patient's doctor will have access to both the patient's name and number. Information submitted to the MPS I Registry will be maintained as confidential in accordance with applicable national privacy regulations and other state and local laws related to medical information.
Find out more about the MPS I Registry?
Speak with your doctor about the MPSI Registry. Contact the MPS I Registry's toll-free number at 800-745-4447, ext. 15500 for more information.
To learn more, visit the MPSI Registry at www.registrynxt.com