Cerebral Palsy Research Network Blog

Archive for December 2016 – Page 2

Cerebral Palsy Registry Gets Approval at Four Sites

Four additional Cerebral Palsy Research Network (CPRN) sites have received approval from their respective Institutional Review Boards (IRBs), the body that governs human subject research at a hospital, to enroll patients in our clinical cerebral palsy registry. The lead site for the CPRN Registry, Nationwide Children’s Hospital (NCH), has been enrolling patients in the CPRN Registry since April 2016. The additional sites include:

  • Children’s of Alabama, Birmingham, AL
  • Children’s Hospital of Colorado, Denver, CO
  • Nemours/AIfred I. duPont Hospital for Children, Wilmington, DE
  • Primary Children’s Hospital, Salt Lake City, UT

Some of these sites will be using CPRN’s REDCap forms to collect patient data, so data collection will begin imminently and some will be using CPRN forms that have been developed by NCH and Texas Scottish Rite Hospital, built into their electronic medical records (EMR) system. Enrollment at sites using the EMR forms will start later because the forms need to be integrated by the hospital information technology staff.

In addition to these four sites and the lead site with IRB approval to collect patient data for the CPRN Registry, four other institutions have submitted the CPRN IRB protocol for approval at their site. CPRN expects to have 10 or more sites approved for the CPRN Registry in the first half of 2017.