Cerebral Palsy Research Network Blog

Archive for Cerebral Palsy Registry

CPRN Registry Data Collection is Expanding

The Cerebral Palsy Research Network (CPRN) trained two sites on Wednesday to begin data entry in the CPRN registry. Gillette Children’s Specialty Care and Seattle Children’s Hospital (SCH) are two of the 13 CPRN sites that have received approval from their institutional review board (IRB) to begin data collection for the CPRN Registry. While others sites are planning to enter CPRN Registry data directly into their electronic medical records (EMR) system, Gillette and SCH are getting an earlier start with a web-based collection system that CPRN offers. At the completion of this week’s training, five sites will be up and running with the CPRN Registry. These sites represent a demographically diverse population in the United States including:

  • Children’s of Alabama, Birmingham, AL
  • Gillette Children’s Specialty Care in St. Paul, MN
  • Nationwide Children’s Hospital, Columbus OH
  • Primary Children’s Hospital in Salt Lake City, UT
  • Seattle Children’s Hospital, Seattle, WA.

Other sites with IRB approval are actively implementing the CPRN Registry in their EMR but only our lead CPRN Registry site, Nationwide Children’s, is collecting data through that method today. The data collection from these additional sites begins to shift the mix of the CPRN Registry to a truly multi-center registry which is critical to the quality of our future research and our vision of a national cerebral palsy registry.