On July 30th, the Cerebral Palsy Research Network (CPRN) submitted its first application for funding for a CP study entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study” to the Patient Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Rich Stevenson of the University of Virgina, brought together the leadership team of CPRN (Dr. Amy Bailes, Paul Gross, Dr. Susan Horn, Dr. Unni Narayanan, Dr. Garey Noritz and Dr. Jerry Oakes) along with Dr. Diane Damiano from the National Institutes of Health Clinical Center and patient advocate Michele Shusterman of CP Daily Living as investigators. This multi-center observational study will enroll 2500 patients from 18 of the CPRN Network sites to study practice variation and outcomes for lower extremity surgery including orthopedic surgeries and neurosurgery for children with CP. The need for comparative effectiveness research was identified as a key outcome from the NIH Workshop entitled “State of Science and Treatment Decisions in Cerebral Palsy” in November 2014.
You can read an overview of the study on our research page entitled Surgical Decision Making in Cerebral Palsy Study.