Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

CPRN Expands Patient Engagement to Include Adults with Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) has invited adults with cerebral palsy and caregivers of adults to join an adult registry study panel. The panel will partner with clinicians and providers who have led the creation of adult registry elements for the CPRN Registry. The panel will help determine study questions that are most important to adults with CP and have an opportunity to participate in the research process. The CPRN Adult Registry group is co-led by Mary Gannotti, PT Ph.D. and Debbie Thorpe, PT Ph.D. and includes providers from a wide range of disciplines who treat adults with (or children or both) CP. The adult registry study panel will be organized by Michele Shusterman of CP Now Foundation and CP Daily Living in her role as the Patient Engagement Leader on the CPRN leadership team. The panel members will represent a group of people with CP with diversity among age, race, gross motor function, and cognitive abilities.

CPRN plans to invite a similar panel to participate in the CPRN Registry efforts for children. Both groups will be extended opportunities to influence the overall research agenda for CPRN at a future planning meeting. The engagement of patient stakeholders in research has been demonstrated to enhance the impact of clinical research and is integral to the mission of CPRN.

Adult Cerebral Palsy Registry Completed

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.