Cerebral Palsy Research Network Blog

Cerebral Palsy Registry Forms Completed

The Cerebral Palsy Research Network (CPRN) completed its first set of cerebral palsy registry forms. The forms, built on the popular research platform called REDCap, will enable the first patients and events to be captured in the CPRN registry in the coming months. This milestone is important because it allows the providers to more easily visualize the CPRN Common Data Model (CDM) that they collaboratively built in the second half of 2015. It will also provide the initial test bed for the CPRN Registry – validating the data fields and which medical discipline collects them. While the goal for the CPRN Registry is to collect patient data as part of routine clinical care directly into the institution’s electronic medical record (EMR) system, the REDCap based system will be used by some sites initially as an effort made after the patient visit. These early efforts will be critical to fine tuning the CPRN Registry data elements.

The CPRN Registry EMR forms, the interface that the clinicians will use during patient visits or surgeries, will replace the REDCap forms before the CP registry is broadly deployed at CPRN charter sites. These forms are being developed and tested by several CPRN sites for the leading EMR systems used by hospitals. During this early testing phase, REDCap clinical research assistants, rather than clinicians, will be responsible for the data entry based off of information available through the patient’s medical record. The availability of the CPRN Registry in REDCap will accelerate the development, testing and deployment of the CPRN Registry allowing CPRN meet or exceed it goals for deployment of the CPRN registry later this year.