The Cerebral Palsy Research Network (CPRN) completed its adult cerebral palsy registry data elements. The adult planning group formed in July 2015 under the leadership of Mary Gannotti, PT PhD of the University of Hartford and Debbie Thorpe PT PhD of the University of North Carolina Chapel Hill. The diverse team included clinicians, therapists, social workers and educators that work with adults and children with CP including:
- Anita Bagley, PhD, MPH Shriners of Sacramento
- Hank Chambers, MD, Rady Children’s Hospital, and University of California San Diego
- Marina Gazayeva, FNP-BC, Columbia University Medical Center, Weinberg Family Cerebral Palsy Center
- Jill Gettings, MD, Gillette Lifetime Specialty Healthcare Clinic
- Ed Hurvitz, MD, University of Michigan, Physical Medicine and Rehabilitation
- Sherry Lanyi, MA, CCC-SLP, Perlman Center, Cincinnati Children’s Hospital Medical Center
- Michael Msall, MD, University of Chicago Medical Center, Pediatrics
- Garey Noritz, MD, Nationwide Children’s Hospital, Pediatrics
- Gadi Revivo, MD, Rehabilitation Institute of Chicago, Physical Medicine and Rehabilitation
- Beth Ann Loveland Sennett, EdD, University of Hartford, Department of Education
- Robert Wagner, MD, Gillette Lifetime Specialty Healthcare Clinic
- Lisa Zimmerman, LSW, Perlman Center, Cincinnati Children’s Hospital Medical Center
- Marcia Greenberg, PT, MS, Center for Cerebral Palsy at UCLA
The adult cerebral palsy registry is an extension of the CPRN clinical registry that predominantly adds patient reported outcomes (PROs) to the existing pediatric focused registry elements. These PROs focus on quality of life issues including employment, education, functional decline, intimacy and pain among other areas. The adult cp registry is expected to provide valuable data for long term outcome research for cerebral palsy.
CPRN plans to integrate the adult cerebral palsy patient outcomes into its patient reported outcomes platform that will allow participation from adults who are not served by CPRN centers. CPRN plans to launch its adult cerebral palsy registry in the Fall of 2016.