The Cerebral Palsy Research Network (CPRN) launched an open resource page today to provide critical information to candidate sites for the network on how to become a future registry site. CPRN launched its Cerebral Palsy Research Network Resources page with the notes and an audio download from a conference call recording from its first Investigator meeting with charter members on Monday, February 22, 2016. The goal is to create complete transparency in its proceedings to roll out a center-based national cerebral palsy registry.
CPRN plans to provide access to critical documents such as:
- The CPRN Registry Common Data Model.
- Institutional Review Board (IRB) protocols.
- Business Associate Agreements for secure sharing of data.
- Data collection forms for the CPRN Registry.
These resources should help candidate centers/sites interested in participating in the registry to prepare for the rollout of the CPRN Registry at their institutions.
In addition, CPRN has also created a library of webinars to educate interested parties on key aspects of clinical research networks and CPRN in particular. Check out: How will CPRN integrate with electronic medical records to capture CP registry data?
CPRN would like to get your input about what additional information or resources you need.
The Cerebral Palsy Research Network (CPRN) is excited to announce that it is inviting fourteen new sites to join its six founding institutions. CPRN welcomes the sites and think they will be make valuable contributions to the network. The founding sites include the hospital and universities affiliated with our leadership team:
The new sites (Investigators) that are being invited to join our team as charter members include:
- AI duPont Hospital for Children (Freeman Miller, M.D., Orthopedics)
- Benioff Children’s Hospital (Yvonne Wu, M.D., M.P.H., Neurology)
- Boston Children’s Hospital (Benjamin Shore, M.D., M.P.H., F.R.C.S.C, Orthopedics)
- Colorado Children’s Hospital (Dennis Matthews, M.D., Physical and Rehabilitation Medicine)
- Gillette Children’s Specialty Healthcare (Michael Partington, M.D., Neurosurgery)
- Primary Children’s Hospital (Robert Bollo, M.D., Neurosurgery)
- Rady Children’s Hospital (Pritha Dalal, M.D., Physical Medicine and Rehabilitation)
- Seattle Children’s (Kristie Bjornson, Physical Therapy, Ph.D.)
- Texas Scottish Rite (Nancy Clegg, R.N., Ph.D.)
- UCLA (William Oppenheim, M.D., Orthopedics)
- University of Florida – Jacksonville (Aga Lewelt, M.D., Physical Medicine and Rehabilitation)
- University of Michigan (Ed Hurvitz, M.D., Physical Medicine and Rehabilitation)
- University of North Carolina – Chapel Hill (Debbie Thorpe, Physical Therapy, Ph.D.)
- UVA (Chris Lunsford, M.D., Physical Medicine and Rehabilitation)
These investigators will form the Investigator Committee (IC) for CPRN to not only implement the CPRN registry at their institutions but to plan future studies and quality improvement initiatives. CPRN also welcomes the following investigators to join the IC from the founding institutions:
- Jilda Vargus-Adams, M.D., M.P.H., Physical Medicine and Rehabilitation, from Cincinnati Children’s
- Jeffrey Leonard, M.D., Neurosurgery, from Nationwide Children’s Hospital
- Brandon Roque, M.D., Neurosurgery, from Children’s of Alabama
The CPRN charter members will be the first sites to pilot the CPRN registry and help shape the future research agenda of CPRN. Ten other sites requested membership but could not be accommodated for this initial phase. CPRN plans to embrace an open process for adding future sites for the registry and additional research. Sites interesting in joining CPRN in the future should take advantage of our published meeting minutes and recorded meeting, sample IRB protocols and data collection tools to be ready at our next opportunity to add sites.
Thank you to all of the founding and new site members for your dedication and willingness to collaborate in CP research. The CPRN team is grateful for all of your efforts to make this network a change agent in the field of CP research.
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.