The Cerebral Palsy Research Network (CPRN) database team and informatics leaders from Nationwide Children’s met by teleconference on Monday, November 2nd, to review the Cerebral Palsy Research Network Registry Common Data Model (CDM). The team from Nationwide Children’s provided excellent suggestions to simplify the CPRN CDM. The CPRN data base team took the action item to refine the CDM from the advice of Nationwide and will deliver a modified CDM. Nationwide will then begin an in-depth comparison of the CPRN CDM to the Nationwide Learn from Every Patient (LFEP) registry that has been operational for several years. This process will allow Nationwide to more rapidly build the front-end flowsheets in Epic to support the new CPRN registry. In addition to advancing the work, this process will allow Nationwide to compare the LFEP data to future datasets from the CPRN registry. After the review is complete, Nationwide will then begin implementation of the Epic flowsheets.
CPRN has committed to share the final Cerebral Palsy Common Data Model on its website as soon as it is completed. The CDM should be complete and shared imminently. The CDM will be available for download and public comment. Nationwide Children’s has committed to sharing the Epic flowsheets with any center that is interested.