First CPRN Registry Training Completed

The Cerebral Palsy Research Network (CPRN) completed its first training for its cerebral palsy registry in REDCap. Two sites, Children’s of Alabama and Primary Children’s Hospital in Utah, participated in the training. REDCap is a web-based electronic data capture alternative to CPRN’s usage of Electronic Medical Record (EMR) systems to collect CP registry data.

While CPRN’s ultimate vision is to capture all of its CP registry data points through the use of a site’s EMR, REDCap is an interim solution that a few CPRN charter member sites are planning to use while they prepare their EMR systems to capture registry data.

This first training milestone is significant for a number of reasons including:

  • it is a key step to test the ability to collect and harmonize data from different data sources (Epic and REDCap);
  • it will validate the timing of planned data collection events for a longitudinal study;
  • it will increase the number of sites collecting CPRN Registry data;
  • it will refinoue r training to scale to more sites that plan to use REDCap;
  • it will test our cerebral palsy registry data model;
  • and it will allow for planning for future studies that may mix EMR data collection with REDCap.

Training materials will be posted on the resources page after revisions are made based on feedback from the participants in the training.