Schedule of Assessments

Recommended Schedule of Assessments

Physicians should determine the actual frequency of necessary assessments according to a patient's individualized need for medical care and routine follow-up at the site/practice. 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, as well as regulatory authorities in the US and Europe.

The Recommended Schedule of Assessments represents the core assessments to optimally monitor progression over the life-long course of the disease and obtain long-term clinical status information for patients using any disease support and/or treatment measures.

Adherence to these recommendations can help to facilitate consistent and thorough clinical evaluations. These clinical evaluations may reveal changes in a patient's clinical status and provide information for a database to fulfill the scientific objectives of the Pompe Registry.

Click here to view a PDF of the Recommended Schedule of Assessments.

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Schedule of Assessments

The Pompe Registry has developed a recommended schedule of assessments to help in the care and monitoring of patients with Pompe disease.

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Pompe Registry

Find out about the Pompe Registry, an ongoing, observational database that tracks natural history and outcomes of patients with Pompe disease.

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