CPRN founder, Paul Gross, was recognized with the “Making a Difference” award at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in October 2015. Paul was given an opportunity to address the general assembly of 1,100 attendees after accepting the award. His speech, entitled “From Anxiety to Impact: Focusing Parental Anxiety on Advancing Research” described his journey into clinical research with his wife Lori after the premature birth of their son. AACPDM posted this general session recently. The video, 19 minutes in total, provides the back story to the creation of the Cerebral Palsy Research Network (CPRN). Gross describes his son’s early birth trauma, his initial diagnosis of hydrocephalus, and how he applied his business skills to an under researched area of medicine. He then connects that experience with his son’s later diagnosis of cerebral palsy and his wife’s insistence that he apply his learning in clinical research to the founding of CPRN.
The Genesis of the Cerebral Palsy Research Network
CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!
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:
- Children’s Hospital of Alabama (Jerry Oakes, M.D.)
- Cincinnati Children’s Hospital (Amy Bailes, PT Ph.D.)
- Nationwide Children’s Hospital (Garey Noritz, M.D.)
- SickKids (Unni Narayanan, M.D.)
- University of Hartford (Mary Gannotti, PT Ph.D.)
- University of Utah (Susan Horn, Ph.D. and Jacob Kean, Ph.D.
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.
Members of the CPRN leadership team joined Dr. Rich Stevenson, Principal Investigator for the Enhancing Surgical Decision Making study, in a teleconference with two program directors at Patient Centered Research Outcomes Institute (PCORI) to discuss how to improve the opportunity for funding. CPRN had submitted an application in July, 2015 and learned on January 29, 2016 that the application was not funded. While the application scored well, PCORI only funded 5 of 34 applications. We met with PCORI staff to better understand the feedback from reviewers and determine our path forward. The dialogue was very productive and the staff was encouraging about the importance of surgical decision making in cerebral palsy.
The next PCORI funding cycle that will open for this study requires a letter of intent to be submitted in May, 2016. The study team plans to revise the study incorporating the feedback from PCORI staff and reviewers and re-submitting. We will also consider submitting a variant of the study to NIH. We remain committed to the importance of studying surgical interventions for cerebral palsy and confident that there will be a public funder, either PCORI or NIH, for the study.
The Cerebral Palsy Research Network welcomes Jacob Kean, Ph.D., to the CPRN leadership team and Executive Committee, as the Data Coordinating Center Principal Investigator. Dr. Kean replaces Dr. Susan Horn in this day to day role. Dr. Horn continues to be integrally involved in CPRN as a member of the leadership team and executive committee. Dr. Kean has taken over responsibilities for coordinating the data center effort to finalize the CPRN Registry Common Data Model, implement forms in REDCap, interface with the team at Nationwide Children’s Hospital implementing the Epic based forms, database implementation and function as the principal investigator representing the CPRN DCC in research projects.
Dr. Kean comes to the University of Utah with a deep background in the development and refinement of clinical outcomes measures and the implementation of evidence-based practices. He expertise is a welcome addition to the CPRN team and has been working with the leadership team since he joined the University of Utah in the Summer of 2015. You can read more about Dr. Kean’s background on our CPRN leadership page.
The Cerebral Palsy Research Network (CPRN) reached a major milestone last week with its partner Nationwide Children’s Hospital (NCH). Members of the CPRN leadership and the CPRN Data Coordinating Center (DCC) reviewed latest version of its cerebral palsy registry Common Data Model (CDM) with the NCH leadership in informatics. NCH had given substantive feedback to CPRN on the model in early November. NCH determined that the feedback had been addressed and it was ready to begin its implementation of the CPRN data model. The group agreed to have a checkpoint in February, 2016.
Nationwide Children’s will be modifying its existing cerebral palsy registry, known as Learn From Every Patient, to include the CPRN cerebral palsy registry CDM. This effort will form the basis for CPRN’s electronic medical records (EMRs) based capture system for the Epic system. NCH has generously offered to share its form modules with other CPRN Epic sites. Adoption of the CPRN cerebral palsy registry is the first task of CPRN charter member sites. The use of EMRs for the collection of common data by clinicians makes the CPRN cerebral palsy registry a first of its kind for a multi-center registry. CPRN sites will use hospital EMRs to collect the majority of the registry data as part of routine care of patients with cerebral palsy which is unique. The Cerebral Palsy Research Network is very appreciative of Nationwide Children’s Hospital’s leadership and contribution to this groundbreaking effort.
NCH also agreed to advance the collection of patient reported outcomes (PROs) as part of this effort. NCH plans not only to provide a solution for patient entered data through Epic’s patient facing portal, MyChart, but also to enable clinicians to gather the information directly from patients and caregivers.
The Cerebral Palsy Research Network (CPRN) shared its Common Data Model (CDM) that comprises its forthcoming cerebral palsy registry with the steering committee for National Institutes of Health’s (NIH) effort to standardize cerebral palsy clinical study data.
The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and Stroke (NINDS), the leading funder of brain research, have been working together to define Common Data Elements (CDEs) for cerebral palsy. NINDS has supported the creation of CDEs for many brain conditions such as Parkinson’s disease and stroke in the interest of standardizing data collection and sharing to accelerate clinical research. CPRN leveraged existing NINDS CDEs where possible but completed its registry effort in advance of the NINDS CDE process for cerebral palsy.
The sharing of the CPRN CDM represents a tremendous opportunity to leverage the CPRN registry for future cerebral palsy studies. NINDS requires the use of CDEs for a given condition in studies that it funds.
“We want to make sure that all of the elements are considered for the final NINDS CDEs, “ said Dr. Eileen Fowler who co-leads the CDE effort on behalf of the AACPDM. “The steering committee felt that it would be helpful for the working groups to have a copy of the CPRN data elements.” CPRN founder Paul Gross said that its registry definition process included several members of the CDE working groups. CPRN had stated publicly that it planned to share its data model with the CDE effort as soon as it was complete and is happy that it is well received.
The Patient Centered Outcomes Research Institute (PCORI) makes its funding decisions at public meetings of its board of governors. The next PCORI board meeting is scheduled for January 26, 2016 and will include a formal decision on the CPRN/University of Virginia application entitled Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study. The CPRN leadership team members, all of whom are co-principal investigators (PIs) for this study, are eager to hear the results of this PCORI application process. Study funding will greatly accelerate the work of CPRN by providing additional support to bring the leadership team, site PIs and the study patient stakeholder partners together as soon as April, 2016 to kick off the cerebral palsy study.
In the interim, CPRN will announce charter members later this month. Charter members will play a key role in finalizing the infrastructure and governance for the CPRN registry and network operations. The PCORI study and future CPRN studies will build on the registry and network infrastructure to accelerate study planning and core data capture for research.
The Cerebral Palsy Research Network (CPRN) was initiated as an outcome of the November 2014 NIH Workshop entitled the State-of-the-Science and Treatment Decisions in Cerebral Palsy. CPRN co-founders Dr. Amy Bailes, Dr. Garey Noritz and Paul Gross were all in attendance at that meeting and involved in the task force that led the effort to plan a national CP registry that has resulted in CPRN. Another significant finding from that meeting was the need for more basic and translational research in cerebral palsy. As an organizer of the first workshop, Gross, a former National Institute of Neurological Disorders and Stroke advisory council member, helped plan the agenda for the upcoming Workshop on Basic and Translational Research for Cerebral Palsy. CPRN participant Dr. Shenandoah “Dody” Robinson will be speaking about her work with stem cells and cerebral palsy. This topic was included because of significant patient advocacy interests expressed at the 2014 workshop.
The CP research workshop agenda builds on many topics that were discussed at the 2014 meeting including neuroplasticity, stem cells, neuroimaging and early detection. NIH encourages both scientists and patient advocates to attend this CP research workshop. The two day agenda includes speakers that are both basic and clinician scientists and provides significant opportunities for discussion and breakouts during the workshop. CPRN leadership will be in attendance and encourages centers with basic and translational research activities in CP to attend this meeting on March 24-25, 2016 at NIH. The NIH Workshop overview and registration links can be found here on the NIH Meeting site.