The path to diagnosis can be long and complicated and patients are frequently misdiagnosed along the way.

In an effort to improve diagnostic accuracy, the AMDA and Genzyme collaborated on a questionnaire project in the first-quarter of 2012. The goal of the questionnaire was to gather data on how patients were diagnosed.

Forty-nine questionnaires were completed.  The data was submitted anonymously to Genzyme, who analyzed the results.  To view the results, please click here.

Thank you to everyone who participated in this survey.  The results will be used to better target those physicians and specialists who are diagnosing Pompe patients to improve diagnostic accuracy