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MPS I Registry
 Home > Health Care Professionals > Participate


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About MPS I Disease
Overview of the Registry
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Participation Process
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Enrollment
Physician Enrollment
Online Enrollment
Patient Enrollment
Submitting Initial Case Report
Making Changes to Enrollment
Submit Data
Patient Monitoring
HSCT Assessment
uGAG Testing
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Making Changes to Enrollment

You may need to document changes in a patient's status in the MPS I Registry. This includes changing patient demographic information, transferring a patient to a new primary treating physician, withdrawing a patient from the MPS I Registry, as well documenting a patient's death.

Since physicians submit patient clinical information to the MPS I Registry, any patient requests for changes in his/her information should be made through you or your Study Coordinator by completing the appropriate data entry screens in EDCR or by contacting the MPS I Registry Staff for more information. This will assist in the routine maintenance that is required to keep the Registry database up to date.

Patient Withdrawal from the Registry

Patients have the right to withdraw their authorization at any time. Requests to withdraw authorization must be made in writing to you, the physician. You must then notify the MPS I Registry in writing of your patient's withdrawal of authorization by completing the appropriate data entry screens in EDCR.

If you withdraw a patient from the MPS I Registry, the patient's personal ID number, initials, and the physician link will be removed from the MPS I Registry database. Your patient's clinical data will remain in the database for use in aggregate data reports; however, this data will no longer be linked electronically with any identifying information. Also, if a patient withdraws from the MPS I Registry, new clinical data pertaining to the patient will not be included in the next data report. In other words, no new information pertaining to the patient will be entered into the database.






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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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