The Cerebral Palsy Research Network (CPRN) reached a major milestone last week with its partner Nationwide Children’s Hospital (NCH). Members of the CPRN leadership and the CPRN Data Coordinating Center (DCC) reviewed latest version of its cerebral palsy registry Common Data Model (CDM) with the NCH leadership in informatics. NCH had given substantive feedback to CPRN on the model in early November. NCH determined that the feedback had been addressed and it was ready to begin its implementation of the CPRN data model. The group agreed to have a checkpoint in February, 2016.
Nationwide Children’s will be modifying its existing cerebral palsy registry, known as Learn From Every Patient, to include the CPRN cerebral palsy registry CDM. This effort will form the basis for CPRN’s electronic medical records (EMRs) based capture system for the Epic system. NCH has generously offered to share its form modules with other CPRN Epic sites. Adoption of the CPRN cerebral palsy registry is the first task of CPRN charter member sites. The use of EMRs for the collection of common data by clinicians makes the CPRN cerebral palsy registry a first of its kind for a multi-center registry. CPRN sites will use hospital EMRs to collect the majority of the registry data as part of routine care of patients with cerebral palsy which is unique. The Cerebral Palsy Research Network is very appreciative of Nationwide Children’s Hospital’s leadership and contribution to this groundbreaking effort.
NCH also agreed to advance the collection of patient reported outcomes (PROs) as part of this effort. NCH plans not only to provide a solution for patient entered data through Epic’s patient facing portal, MyChart, but also to enable clinicians to gather the information directly from patients and caregivers.