The participants in the Cerebral Palsy Research Network (CPRN) completed a cross discipline review of the CPRN registry’s cerebral palsy Common Data Model (CDM) last week. The CDM consists of all of the data elements that have been defined by each of the four discipline groups – non-surgical doctors (developmental pediatricians, neurologists and physiatrists), orthopedic surgeons, neurosurgeons and the physical and occupational therapists. These data elements will be collected as a part of routine clinical visits and surgical interventions for cerebral palsy at participating CPRN sites and form the basis for the CPRN registry. These planned 200 data elements characterize the patient and the interventions (medical, surgical and therapeutic). An additional set of data elements will be entered by the patients and caregivers filling out surveys that characterize patient outcomes.
This milestone is significant for CPRN as it enables the CPRN registry database to be built. Over the coming weeks, the final qualifications will be defined for these elements – data types and ranges – that assure high quality data collection and reliability. Completion of this step enables the creation of the front-end data collection system that will be hosted by the electronic medical record (EMR) system at participating CPRN centers. Both the front end and back end systems are planned for creation in November clearing the path to pilot the CPRN registry in early 2016.