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.
The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the effort to determine how to advance the study of outcomes of adults with CP. After examining which data sources might be most amenable to the study of adults, Dr’s Gannotti and Thorpe approached the leadership of CPRN to inquire about expanding the CPRN registry to include adults with CP. Given the number of CPRN participants that also treat adults and the importance of outcomes in the adult population, the CPRN leadership team invited Dr’s Gannotti and Thorpe to join CPRN and lead the effort to define the adult aspects of the CPRN registry.
Dr. Gannotti will join the leadership team and work with Dr. Thorpe to build an interdisciplinary team of clinicians to define the adult registry extensions and outcome measures. CPRN sites that treat adults will be able to enroll adult patients in the registry as part of their clinic.
The physical and occupational therapy subspecialty group finished their initial data element definition on Tuesday, July 14, 2015. The group, led by CPRN network leader Dr. Amy Bailes, a physical therapist at Cincinnati Children’s Hospital, consisted of Dr. Bailes and eight therapists who treat CP in North America including:
- Dr. Kristie Bjornson, Seattle Children’s Hospital
- Dr. Mary Gannotti, University of Hartford
- Marcia B. Greenberg, UCLA
- Dr. Karen Harpster, Cincinnati Children’s Hospital
- Christopher F. Joseph, Kennedy Krieger Institute
- Dr. Linda Lowes, Nationwide Children’s Hospital
- Teressa Reidy, Kennedy Krieger Institute
- Andrea Todd, Nationwide Children’s Hospital
The group has met consistently every other week since April 28th to define the important therapy data to collect during a team clinic visit for individuals with cerebral palsy. The cerebral palsy therapy registry core will provide important data points about the role of therapy in outcomes in CP.