Health Assessment

Physicians will determine the actual frequency of necessary assessments according to a patient’s individualized need for medical care and routine follow-up. As a minimum, however, a Recommended Schedule of Assessments has been developed based on the input of physicians from the international medical community with expertise in the care of patients with Pompe disease.

The Recommended Schedule represents the core assessments that are currently thought to monitor Pompe-related clinical manifestations and to stage disease progression across the life-long course of the disease. The assessments include neurologic, respiratory, cardiac, gastroenterologic, and musculoskeleta.

Adherence to these recommendations is encouraged since they facilitate the Registry’s intent for consistent and thorough clinical evaluations, which may reveal changes in a patient’s status and provide information for a database to fulfill the scientific objectives of the Registry.

The Recommended Schedule is incorporated into our secure data submission system. .

To view a PDF of the Recommended Schedule of Assessments, see the Guide to Registry Materials.