Pompe disease registry

One of the important aspects of a treatment programme will be to monitor the effects of the treatment and therefore it is important that patients who wish to be treated are part of a Patient Register.

A Pompe Register has been set up and will provide ongoing information on a database that tracks the patient’s history and outcomes of patients with Pompe disease. Participation is open to all physicians managing patients with Pompe disease.

Find out more about the register