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!

CPRN Registry EMR Forms Milestone Reached

CPRN Epic EMR Form

CPRN Epic EMR Form

Nationwide Children’s Hospital (NCH), along with Texas Scottish Rite Hospital, are leading the charge to build the CPRN Registry into the Electronic Medical Record (EMR) systems for CPRN. A major milestone for the CPRN EMR forms development was reached today. The forms for non-surgical doctors who treat people with cerebral palsy were released to the test environment at NCH. CPRN leadership team member Dr. Garey Noritz, the CP Program Director at NCH, will be testing the Epic EMR based forms this week. After making revisions, the forms will be released for testing during CP clinic days at NCH starting in April 2016. The CPRN Registry forms at NCH build on NCH’s experience with its own CP registry that was started several years ago. The CPRN Registry forms for Epic will be made available to other Epic sites that are part of CPRN for participation in the registry.

“The CPRN forms represent a next step in the impact of our existing CP registry at Nationwide Children’s,” said Dr. Noritz. “The EMR forms not only make our CP clinic more efficient, but now we can broaden the use of patient data to multiple to centers and improve the quality of care for people with CP.”

CPRN is working with member sites to get the CPRN Registry forms developed not only for the Epic EMR but also Cerner and AllScripts EMRs. These three EMR implementations will cover all of the existing CPRN sites and 90% of the candidate CPRN sites in the future. We greatly appreciate Nationwide Children’s Hospital and Texas Scottish Rite Hospital for making these forms available to other sites.

National Cerebral Palsy Awareness Day

Gross Poliski Family

The Gross Poliski Family

Each year, the patient advocacy organization Reaching for the Stars, persuades Congress to re-affirm March 25th as National Cerebral Palsy Awareness Day. At CPRN, cerebral palsy is personal and we want to call attention today, March 25, 2016 and share why we do what we do. Everyone on the founding team either has a child with CP, treats children with CP as a provider, or is deeply committed to research to improve outcomes for people with CP.

William is a blue belt

William is a blue belt

Our founder, Paul Gross, and our online editor, Lori Poliski, have an eleven-year-old boy named William who has bilateral spastic cerebral palsy (spastic diplegia). William was born prematurely at 30 weeks and went through the “preemie mill” with one insult after another to his 3 lb, 4 oz body. His early brain injury had a lasting effect in the form of the two neurological conditions: hydrocephalus and cerebral palsy. William is resilient with an infectious spirit and he demonstrated an incredible will to live then and now he is thriving. He inspires all who meet him. He loves to ride his recumbent bike, participate in non-adaptive karate, snowboard, read and build Legos. As his parents, it was trying to understand how best help him with his gross motor issues and his gait that led us to engage in cerebral palsy research and eventually found CPRN.

CP Awareness Day 2016

CP Awareness Day 2016

Given that today is National Cerebral Palsy Awareness Day, his mom Lori asked him what he would like people to know about cerebral palsy. William said, “Just because someone may have leg braces (orthotics), use a walker or be in a wheelchair doesn’t mean that they don’t have the ability to do whatever someone else may be able to do…they might just do it differently.”

CPRN at NIH Workshop on Cerebral Palsy

Leaders, investigators, and advisors from the Cerebral Palsy Research Network (CPRN) are attending the National Institutes of Health (NIH) Workshop on Basic and Translational Research for CP this week on March 24, 2016. CPRN founder Paul Gross, a former National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council member, helped organize the agenda for the meeting. Gross, along with numerous advocates in the CP community, have encouraged NINDS leadership to create a strategic plan for preventing, treating and curing cerebral palsy. The first step toward a plan began with the NIH Workshop on the State-of-Science and Treatment in Cerebral Palsy in November 2014. Of five key objectives identified by participants in that meeting, more focus on basic and translational research was an important area for NINDS to consider and this week’s meeting agenda will focus on basic and translational research goals.

The agenda and format will allow the attendees – clinicians, researchers and patient advocates — to discuss the latest scientific advances in promising areas with the potential to alter the course of CP including neuroprotection, neuroplasticity, imaging, stem cells and animal models. Several CPRN investigators and contributors including Dr. Yvonne Wu from UCSF and Dr. Shenandoah “Dody” Robinson from Boston Children’s are speakers in the workshop. The synthesis of this meeting should help NIH further hone a strategic plan for cerebral palsy. The meeting is being streamed live by NIH and can be viewed here.

CPRN views participation in this type of national government planning meeting as critical to its mission of improving outcomes for people with cerebral palsy. Many findings will eventually need a clinical trials infrastructure to bring the benefits to patients. The CPRN Registry will help inform researchers of the most important areas to focus on and determine how quickly a study could be conducted across our network. It will also enable following long term outcomes for people that receive a range of treatments.

CPRN Releases Preliminary CP Registry Forms

The Cerebral Palsy Research Network (CPRN) posted the initial draft of its cerebral palsy registry forms on the resource page today. The CPRN Registry is intended to define the patient characteristics, interventions and outcomes for people treated for cerebral palsy at the CPRN centers. The data collected in the CPRN Registry will be used for planning high quality, multi-center research studies and quality improvement initiatives for cerebral palsy. The CPRN Registry consists of data elements, or fields, that are captured during the normal course of care for people with CP. The preliminary CP registry forms are implemented in the popular research platform called Research Electronic Data Capture (REDCap) and will be hosted by the CPRN Data Coordinating Center at the University of Utah Health System & Innovation Research Program. These forms will help with the pilot phase of the CPRN registry by allowing sites to begin entering patient data to test the CPRN registry capabilities. Ultimately, the CPRN Registry data will come directly from the CPRN sites’ Electronic Medical Record (EMR) system that is used by clinicians during patient visits and in-patient hospitalizations for cerebral palsy. The REDCap forms will also be used by sites that are not able to implement the CPRN EMR forms.

The CPRN Registry forms in REDCap format are available as PDF downloads for evaluation by the public – CPRN sites, candidate sites, other CP registries, patients and caregivers – and can be found on our resource page. CPRN welcomes feedback on the forms; please submit your comments to info@cpresearch.org.

CPRN Leadership Team Meets in the Windy City

The CPRN leadership team held its first face-to-face meeting Sunday, March 13, 2016 in Chicago. We had been working virtually for more than a year via conference calls and email. The opportunity to spend nine hours together in the same room allowed us to make incredible progress working on the strategy and plans rolling out the Cerebral Palsy Research Network. In attendance at the meeting were:

CPRN Team T-Shirts

  • Amy Bailes, PhD, Physical Therapist from Cincinnati Children’s Hospital
  • Mary Gannotti, PhD, Physical Therapist from the University of Hartford
  • Paul Gross, CPRN, Founder from Seattle
  • Jacob Kean, PhD, University of Utah Data Coordinating Center
  • Unni Narayanan, MD, Orthopedic Surgeon from SickKids in Toronto
  • Garey Noritz, MD, Developmental Pediatrician from Nationwide Children’s Hospital in Columbus
  • Jerry Oakes, MD, Neurosurgeon from Children’s Alabama in Birmingham
  • Michele Shusterman, (via video conference), Patient Advocate from Greenville

Susan Horn, our PhD biostatistician from the University of Utah, was unable to join us.

The CPRN team spent the morning reviewing and finalizing the CPRN mission, vision, core values and strategic plan. The in-person meeting format was invaluable for achieving consensus on these critical elements to chart out course for the years to come. In the afternoon we discussed important operating procedures for data access and planning our quality and research agendas. And most importantly, we distributed our first team t-shirt! It was our first in person meeting of many to come we hope.

Cerebral Palsy Registry Forms Completed

The Cerebral Palsy Research Network (CPRN) completed its first set of cerebral palsy registry forms. The forms, built on the popular research platform called REDCap, will enable the first patients and events to be captured in the CPRN registry in the coming months. This milestone is important because it allows the providers to more easily visualize the CPRN Common Data Model (CDM) that they collaboratively built in the second half of 2015. It will also provide the initial test bed for the CPRN Registry – validating the data fields and which medical discipline collects them. While the goal for the CPRN Registry is to collect patient data as part of routine clinical care directly into the institution’s electronic medical record (EMR) system, the REDCap based system will be used by some sites initially as an effort made after the patient visit. These early efforts will be critical to fine tuning the CPRN Registry data elements.

The CPRN Registry EMR forms, the interface that the clinicians will use during patient visits or surgeries, will replace the REDCap forms before the CP registry is broadly deployed at CPRN charter sites. These forms are being developed and tested by several CPRN sites for the leading EMR systems used by hospitals. During this early testing phase, REDCap clinical research assistants, rather than clinicians, will be responsible for the data entry based off of information available through the patient’s medical record. The availability of the CPRN Registry in REDCap will accelerate the development, testing and deployment of the CPRN Registry allowing CPRN meet or exceed it goals for deployment of the CPRN registry later this year.

The Genesis of the Cerebral Palsy Research Network

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.

“From Anxiety to Impact: Focusing Parental Anxiety on Advancing Research” was presented by Paul as a keynote at the meeting. You can watch it here to understand how CPRN was started and why there is such commitment to improving the lives for those who live with cerebral palsy.

CPRN Creates New Cerebral Palsy Registry Resource for Candidate Sites

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.

CPRN Adds Fourteen Charter Member Sites

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:

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:

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.

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.