The Cerebral Palsy Research Network (CPRN) posted the initial draft of its cerebral palsy registry forms on the resource page today. The CPRN Registry is intended to define the patient characteristics, interventions and outcomes for people treated for cerebral palsy at the CPRN centers. The data collected in the CPRN Registry will be used for planning high quality, multi-center research studies and quality improvement initiatives for cerebral palsy. The CPRN Registry consists of data elements, or fields, that are captured during the normal course of care for people with CP. The preliminary CP registry forms are implemented in the popular research platform called Research Electronic Data Capture (REDCap) and will be hosted by the CPRN Data Coordinating Center at the University of Utah Health System & Innovation Research Program. These forms will help with the pilot phase of the CPRN registry by allowing sites to begin entering patient data to test the CPRN registry capabilities. Ultimately, the CPRN Registry data will come directly from the CPRN sites’ Electronic Medical Record (EMR) system that is used by clinicians during patient visits and in-patient hospitalizations for cerebral palsy. The REDCap forms will also be used by sites that are not able to implement the CPRN EMR forms.
The CPRN Registry forms in REDCap format are available as PDF downloads for evaluation by the public – CPRN sites, candidate sites, other CP registries, patients and caregivers – and can be found on our resource page. CPRN welcomes feedback on the forms; please submit your comments to firstname.lastname@example.org.