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

 

Adult Patient Reported Registry Nears Completion

Clinicians and researchers of the Adult Study Group have been meeting regularly to refine questions for the CPRN Patient Reported Outcomes registry. Input from the adults with cerebral palsy on the CPRN Community Advisory Committee this summer indicated that consumers wanted more information about pain management, pain prevention, optimizing function with aging, and issues with social and emotional function.

The study group adapted a survey widely used to study pain and pain management. It is developing a survey to ask individuals about perceived changes in function with aging, how they are managing these changes, social and physical supports, community and employment activities, satisfaction with life, anxiety, and depression.

Two initial surveys are being created. The first survey will focus on pain, and will allow answers to questions about pain location, interference, and management.  It will provide useful information for clinicians and consumers.

The second survey will focus on physical, social, and emotional function. It will allow the adult study group to describe self-reported functional changes, social challenges and successes, and emotional struggles and victories.  It will provide useful information for clinicians and consumers.

The study group is planning to have the surveys piloted tested in December by the community advisors for release to the broader CP community in Q1 2017. People interested in CPRN surveys should sign up for CPRN alerts.

This is an important step to begin to address the needs of adults with cerebral palsy. Studying the adult population with CP was determined to be a critical need at the 2014 Workshop on the State of the science and treatments in CP that was held by the National Institutes of Health.

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.