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The Pompe Registry
Reporting. Collaborating. Advancing.
Helping to improve the quality of care for patients with Pompe Disease. Over 190+ investigators and 1000+ patients have contributed 6,000 patient years of data since 2004.
Thank you to all of the Pompe patients and physicians for contributing to the medical understanding of Pompe disease.

Treating & Researching Pompe Disease

A disease registry can help improve understanding by enabling physicians to:

Contribute and Share Data

Input participating patient data and have the ability to report on and share that data with other practitioners or your patient in near real time.

Gain Insight

Understanding the variable disease for each patient and assess their progress compared to other patients through aggregate reporting.

Improve Research Globally

By contributing your data to the Pompe Disease Registry, you will contribute to aggregate analysis to understand progression of the disease and ultimately improve patient care.

The Pompe Registry is not just for Medical Professionals.
Find out how the Registry can help Pompe Disease Patients »