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MPS I Registry
 Home > Health Care Professionals > Participate

About MPS I Disease
Overview of the Registry
Participation Process
Physician Enrollment
Online Enrollment
Patient Enrollment
Submitting Initial Case Report
Making Changes to Enrollment
Submit Data
Patient Monitoring
HSCT Assessment
uGAG Testing
MPS Health Assessment
Ongoing Clinical Studies
Data Reporting
Data Management
Physician Login
ERT Safety and Prescribing Information
Antibody Monitoring
Contact Us

Physician Enrollment


All physicians who are managing patients with MPS I disease are encouraged to participate in the MPS I Registry. Physician enrollment in the MPS I Registry is simple -- just complete the Online Physician Enrollment Form. You can also download the PDF version. Fill out the form, sign it, and fax or mail it to the MPS I Registry.

Once the MPS I Registry has processed the Physician Enrollment Form, you will receive a Physician ID Number confirming your enrollment as a participating physician in the MPS I Registry.

Study Coordinators

If you belong to an institution with multiple physicians participating in the MPS I Registry, a Study Coordinator should be designated as the primary contact person who will be responsible for submitting patient data. Please complete the Study Coordinator Contact Information portion of the Physician Enrollment Form. Large institutions may have more than one Study Coordinator.


Submit Data Electronically

Your site may have the opportunity to submit data to the MPS I Registry electronically with the Electronic Data Capture and Reporting (EDCR) program. Contact the Registry for more information.

Related Links & Downloads

   Registry Materials

  Physician Enrollment Form (PDF)
  Patient Authorization Form

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