Cerebral Palsy Research Network Blog

How CPRN built its Cerebral Palsy Registry

CPRN Registry Described in the Archives of Rehabilitation Research & Clinical Translation

The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week.  The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge.  The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.

In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection.  This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites.  Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites.  The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.

The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians.  The CPRN registry database has been built into Epic – one of the leading EMR systems.  Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.

CPRN’s other publications can be found on our publications page.