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 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.

CPRN Registry Protocol Submitted at Nationwide Children’s Hospital

The CPRN Registry Protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CPRN Registry research project, was submitted to the Nationwide Children’s Hospital (NCH) Institutional Review Board (IRB) today. The IRB’s role is to assure the protection of human subjects in research such that it is in accordance with all federal, institutional, and ethical guidelines. The submission of this protocol is a significant milestone in the progress of CPRN to launch a national cerebral palsy registry. It is significant for numerous reasons:

The IRB protocol approval is a required step to begin the collection of patient data for research;

    • Nationwide Children’s Hospital, as part of PEDSnet, enables us to take advantage of the Master Reciprocal IRB Reliance Agreement among PEDSnet institutions of which several are also part of CPRN including AI duPont Hospital, Boston Children’s Hospital, Children’s Hospital of Colorado, Cincinnati Children’s Hospital and Seattle Children’s Hospital;
    • Sites that are not part of PEDSnet can do a project specific reliance agreement;
    • Once the IRB protocol is approved, all other CPRN sites will be able to submit the CP registry protocol to their IRBs;
    • When CPRN seeks to expand its registry, other sites will be able to quickly gain IRB approval through the reliance mechanism.

The CPRN Registry IRB Protocol was submitted at Nationwide Children’s Hospital by Dr. Garey Noritz who is the Director of the Cerebral Palsy Program at NCH and one of the leaders of CPRN. The IRB Protocol can be found on the CPRN Resources page. CPRN appreciates the efforts of Dr. Noritz and Nationwide Children’s Hospital in launching the CPRN Registry.

Two CPRN Presentations Accepted for the AACPDM Annual Meeting

The Cerebral Palsy Research Network (CPRN) received confirmation that the two abstracts that CPRN leaders submitted have been accepted to be presented at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting September 2016. Both abstracts were accepted as Breakfast Seminars and confirm the growing interest of the AACPDM in the work of CPRN.

In the first seminar, Michele Shusterman, patient advocacy leader for CPRN and founder of CP NOW Foundation along with CPRN founder Paul Gross, will present the patient/parent/caregiver survey results that informed CPRN’s recent research study about surgical decision making for children with cerebral palsy. Their talk will be the first public presentation of the survey conducted in the Spring of 2015 that had more than 1,100 respondents. The survey sought to understand the various interventions and alternatives (medical, surgical and therapeutic) that patient families were presented with during a child’s development. The survey results include parent reported outcomes for the decision making process, the challenges, and the results of those interventions.

At the second breakfast seminar, Paul Gross will be joined by CPRN leaders including Dr. Amy Bailes, Dr. Mary Gannotti and Dr. Garey Noritz, to focus on the rollout of the CPRN Registry. The group will present the details of what patient and intervention data will be collected, how it will be collected directly into the hospital’s Electronic Medical Record (EMR) system, how it will be transferred and analyzed by the University of Utah Data Coordinating Center and how Patient Reported Outcomes, for both children and adults, will be integrated into the CPRN Registry. The seminar will also cover the future direction of CPRN with regard to Quality Improvement initiatives and expansion to include other sites.

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.