The Cerebral Palsy Research Network (CPRN) has posted an updated version of its Cerebral Palsy Registry Elements on its website. The CPRN Clinical Registry is a database of patient characteristics, interventions and outcomes for people with cerebral palsy (CP) treated at a CPRN site. The CPRN Registry is built to accelerate the pace of research for CP in the United States. It was established in conjunction with the strategic plan for cerebral palsy developed by the National Institutes of Health. The cerebral palsy registry elements were originally developed by a broad panel of CP experts that treat people with CP and conduct clinical research.
The updated version of the CPRN Registry Elements (RE) was created to facilitate the data transfer process from participating sites gathering data in their institution’s electronic medical records (EMR) to the CPRN Data Coordinating Center at the University of Utah Department of Population Health Sciences. The revised RE:
- Simplifies the number of elements found in the original specification,
- Provides data definition for all elements,
- Includes mappings to elements in the Epic EMR,
- Enables searching so that researchers can easily find elements that are collected in the registry.
The CPRN Registry is currently approved for data collection at 20 sites in the network with active data collection started at 12 sites. Other sites are in the process of preparing to collect data through their respective EMR systems. The CPRN Cerebral Palsy Registry currently has more than 2,000 unique patients and is being used to support a broad array of research initiatives for CP. Patient data is stored securely at the University of Utah’s Center for High Performance Computing.
The streamlined CPRN Registry Elements are a critical milestone in getting the data we are collecting at our sites into the CPRN Registry in Utah so it can be used to support our manyfold research concepts.