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International Board of Advisors

Scientific direction is provided to the Pompe Registry by an independent group of physicians who have extensive experience in managing patients with Pompe disease. These physicians serve as primary liaisons between the Pompe community and the Registry in their geographic regions.

Some of the activities in which the Advisory Board are involved include:

  • Developing recommendations for monitoring Pompe disease patients
  • Reviewing Pompe Registry Clinical Summary Reports and publications on Pompe disease
  • Implementing subregistries to address specific unanswered clinical questions related to Pompe disease
  • Consulting with other physicians and health care providers on the management of Pompe patients

Barry Byrne, M.D.
University of Florida
Gainesville, FL

Dr. Wolfgang Mueller-Felber
Friedrich-Baur-Institut der Medizinischen Fakultät an der Neurologischen Klinik
Munchen, Germany

Priya Kishnani, M.D.
Duke University Medical Center
Durham, NC

Dr. Pascal LaForet
Hôpital la Salpétrière
Paris, France

Dr. Ans Vander Ploeg
Sophia Children’s Hospital (EMC)
Rotterdam, Netherlands

Dr. Jesse Yang
National Taiwan University Hospital
Taipei, Taiwan



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Submit Data Electronically

Your site may submit data to the Pompe Registry electronically with the Electronic Data Capture and Reporting (EDCR) program. If you are not currently a member of the Pompe Registry, enroll in the Registry to begin the process for electronic data submission.



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