Data Management Overview

Data Management Process

It is recommended that data collection for the Fabry Registry be accomplished through the use of electronic CRFs (eCRFs) in an Electronic Data Capture and Reporting (EDCR) system. This Internet-based application allows sites to securely submit data directly to the Fabry Registry without the need for paper-based CRFs. An EDCR 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

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