Benefits of Participation

Your contribution of patient data to the Pompe Registry database can benefit all other Registry participants, since it is pooled with other data to study trends or address specific questions. As a participating physician, you are encouraged to query the database for specific information to facilitate the management of your Pompe patients.

Other benefits of participation include:

• Providing physicians with patient-specific reports to monitor disease status
• Encouraging the exchange of data among participating physicians to facilitate clinical decisions
• Providing access to information on current treatment guidelines and practice patterns
• Serving as a foundation for additional collaborative studies to address unanswered questions related to the management of Pompe patients.