CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!

Neurosurgery Registry Data Definition Complete

The neurosurgery subspecialty group finished their initial data element definition yesterday. The group, led by CPRN network leader Dr. Jerry Oakes, Surgeon-in-Chief at Children’s of Alabama, consisted of ten neurosurgeons including:

  • Dr. Philipp Aldana, Wolfson Children’s Hospital
  • Dr. Richard Anderson, Columbia University
  • Dr. Robert Bollo, Primary Children’s Hospital
  • Dr. Jeffrey Leonard, Nationwide Children’s Hospital
  • Dr. Michael Partington, Gillette Children’s Hopsital
  • Dr. Nathan Ranalli, Wolfson Children’s Hospital
  • Dr. Shenandoah “Dody” Robinson, Boston Children’s Hospital
  • Dr. Brandon Rocque, Children’s of Alabama
  • Dr. Charles Stevenson, Cincinnati Children’s Hospital

The group has met consistently every other week since April 28th to define the important data to collect for the primary neurosurgical interventions for cerebral palsy — selective dorsal rhizotomy and intrathecal baclofen pumps. This common data model will be an important core to the CPRN registry enabling the study of practice variation to target for quality improvement initiatives and study planning for future clinical research.

Investigators to submit PCORI application

The CP Research Network investigators have been invited to submit a full PCORI application for the Large Pragmatic Studies to Evaluate Patient-Centered Outcomes – Spring 2015 Cycle which closes on July 31, 2015. Dr. Richard Stevenson of the University of Virginia is the lead Principle Investigator in the study entitled “Comparative Effectiveness of Major Surgical Treatments for Cerebral Palsy: Child and Family Reported Outcomes to Aid Decision Making.” This study, if funded, will fill a critical information gaps in the treatment of children with CP for clinicians and patient families. Children between the ages of 2 and 12 that are considered candidates for surgical interventions will be enrolled at 10 to 15 sites within the network. Site selection will be completed before the end of June 2015. The study is expected to enroll 2500 patients in the first two years of accrual.

Welcome to the CP Research Network

The Cerebral Palsy Research Network (CPRN) is a group doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with CP.  The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.