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MPS I Registry


Health Care Professionals  
The MPS I Registry is an ongoing, observational database that tracks natural history and outcomes of patients with MPS I. It was initiated worldwide in April 2003 as an international observational registry program sponsored by Genzyme Corporation. As of December 2011, data from over 1000 patients with MPS I have been collected from physicians in over 30 countries. 

Learn more about the MPS I Registry in the following sections:

Patients & Families  
Are you looking for a way to contribute first-hand to a larger goal that may help you and other people living with MPS I disease? Ask your doctor about participating in the MPS I Registry.


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What's New

Patient Case Reports are now available online.

  Login to download

Protocol Amendment

The MPS I Registry Protocol was amended on November 24, 2009. This amendment supersedes the previous MPS I Registry Protocol of December 2007.

  Download the amended protocol

Related Links & Downloads

   Registry Materials

  Physician Enrollment Form (PDF)
  Patient Authorization Form



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