Submit Data

Electronic Submission

It is recommended that data collection for the Pompe Registry be accomplished through the use of electronic case report forms (eCRFs) in an electronic data capture and reporting (EDCR) system accessed via this website.

This Internet-based application allows sites to securely submit data directly to the Pompe Registry without the need for paper-based CRFs. A user manual is available to sites that choose to collect data via the EDCR system; this manual provides a very detailed description of the data collection process and is reviewed with each site as part of its initial Pompe Registry training program.

Paper Submission

If electronic data collection is not feasible at your site, data may be collected using paper CRFs. You may contact a Pompe Registry representative for more information about paper-based data collection.