Participation Process

The steps to participate in the Pompe Registry are:

• Physician Enrollment
• IRB/Ethics Board Review
• Obtain Patient Authorizations
• Registry Training Session

Physician Enrollment

First you must enroll into the Pompe Registry program as a physician. To begin the physician enrollment process, please visit the online enrollment page.

Institutional Review Board

After you are enrolled as a physician, the Pompe Registry Protocol, the Patient Authorization, and relevant supporting information should be submitted to an Institutional Review Board or Independent Ethics Committee (IEC) for review and approval at the discretion of the participating physician.

Patient Authorization

Patients/parents must complete a Patient Authorization form before data is submitted to the Registry. A patient's completed authorization is necessary for participation in the Registry.

Registry Training and Patient Enrollment

After you have been trained on the Pompe Registry system, your patients may be enrolled. You will determine the frequency of your patient's follow-up visits as part of his/her regular treatment program. After these follow-up visits, you provide updated clinical information according to the Pompe Registry Protocol. You will also be instructed on how to obtain a summary of your patient's clinical information (identified by patient ID number, initials, gender, and DOB) and how to access the aggregate database, data reports, and publications.