Pompe Registry

The Pompe Registry is an ongoing, observational database that tracks natural history and outcomes of patients with Pompe disease. Participation is open to all physicians managing patients with Pompe disease.

Physicians are encouraged to collaborate, share observations, and generate hypotheses for evaluation, as well as assist in the collection of clinical data in an effort to guide and assess potential future therapeutic intervention.

The primary objectives of the Registry are:

To enhance the understanding of the variability, progression and natural history of Pompe disease,

To provide the Pompe medical community with recommendations for monitoring patients and reports on patient outcomes to help optimize patient care; and

To characterize and describe the Pompe population as a whole.

To learn more about the Pompe Registry or to enroll online, please visit www.pomperegistry.com

You can also contact your local Genzyme representative or e-mail us for more information on the Pompe Registry.