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!

Patient Advocate Michele Shusterman to Join CPRN Leadership Team

Mrs. Michele Shusterman

Mrs. Michele Shusterman

Michele Shusterman, founder of CP Daily Living, has recently joined the leadership team of the Cerebral Palsy Research Network (CPRN) to coordinate patient and parent input into the CPRN research agenda. She is the mother of a child with cerebral palsy and a tireless advocate for improved support, education and research for cerebral palsy.

Mrs. Shusterman is a Co-PI on the recently submitted PCORI application “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy” where she co-leads the patient stakeholder partners committee. Her opinion piece, “Introducing the term ‘early developmental brain injury/interference’ and a new framework for discussing cerebral palsy,” was published in the February 2015 issue of Developmental Medicine and Child Neurology.1 It has generated ongoing dialogue among professionals and families about how to best promote proactive and timely support for people with CP.

1Shusterman, M. (2015), Introducing the term ‘early developmental brain injury/interference’ and a new framework for discussing cerebral palsy. Developmental Medicine & Child Neurology, 57: 110–111. doi: 10.1111/dmcn.12642
An earlier version of this article appeared on the CP Daily Living website

Join the Cerebral Palsy Research Network

Following our introduction at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting last week, several individuals asked us about how to join. As we move from our cerebral palsy registry definition phase to our pilot phase, we are first seeking sites that want to be charter member sites for CPRN before we open registry participation up more broadly (anticipated in September 2016).

Charter site membership of CPRN is defined as those sites that:

  1. Participate in the pilot phase and initial operating phase of the CPRN clinical data registry.
  2. Participate in the defining of the research network’s Standard Operating Procedures.

Our past experience building the Hydrocephalus Clinical Research Network shows that substantial benefits accrue to the institutions and participants in clinical research networks including:

  • increasing academic opportunity,
  • enabling high-quality research,
  • providing an enriched training environment,
  • improving treatments and outcomes for patients.

Charter site members will need to demonstrate significant commitment to research, inter- and intra-institutional collaboration and institutional support of research activities. Preference will be given first to individuals and their institutions that participated actively in the registry definition phase of CPRN and/or the PCORI application.

Charter membership, once granted, will be on a trial basis. Criteria used to determine progress:

  • Achieving pilot phase milestones including: IT progress, IRB approvals, execution of data use agreements, and enrolling of patients
  • Participation in collaborative efforts will be critical to the trial period.

Road map to CPRN Charter Membership

If you are interested in applying for charter membership to CPRN, please take the following survey. If you are interested in being a registry participant after the pilot phase is over (targeted for September 2016), please sign up for alerts on the homepage and take this survey about your clinical practice at your institution.

The key steps to be a charter member include:

  1. Getting alignment with your peers who treat CP – developmental pediatricians, neurologists, physiatrists, surgeons (orthopaedic and neurosurgery), and therapists. Is everyone on board with this effort? Are they prepared to change how they capture data about a patient visit or intervention? Will the surgeons make the commitment to using this synoptic reporting method for their postoperative notes or as an adjunct?
  2. Working it up the management chain to get the IT effort prioritized. This effort will likely require that your Chief Medical Information Officer and Chief of Surgery are supportive. They will need to convince the CIO to make this a priority. It shouldn’t require too much effort if your institution’s EMR is Epic, but getting it to the top of the list will be a challenge. If you are on another EMR, there would need to be a more significant investment of IT resources to build. We will help you with the process.
  3. Establishing a Principal Investigator (PI) as the lead contact for the effort for your institution. The PI will be expected to be on a bi-weekly call for one hour to advance the work of the network. The PI will also be responsible for getting the other resources to follow-up.

Additional questions? Send your questions to join@cpresearch.net

CPRN’s Potential to Transform Cerebral Palsy Research

“It has been transformative for our field,” said Shenandoah “Dody” Robinson, M.D., a pediatric neurosurgeon at Boston Children’s Hospital, referring to the Hydrocephalus Clinical Research Network (HCRN), during a Cerebral Palsy Research Network (CPRN) information session at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting on Friday, October 24, 2015. The goal of CPRN is to be a collaborative research effort to improve treatments and outcomes of those with cerebral palsy.

CPRN has Potential to be Transformative!

CPRN Founder Paul Gross introduces Cerebral Palsy Research Network in general session address to AACPDM.

Paul H. Gross, the co-founder of HCRN, is building CPRN with the same principles as HCRN to transform cerebral palsy research. Because of his work raising awareness for cerebral palsy at NIH and founding CPRN, the Academy presented him with the “Making a Difference” award at its annual meeting in Austin, Texas on October 23, 2015. In his general session speech, “From Anxiety to Impact: Focusing Parental Energy on Advancing Research,” Gross introduced the idea and progress of CPRN to an audience of 1,100 physicians and medical practitioners who treat patients with cerebral palsy (CP) and conduct research. The attendees were buzzing about the concept of a multi-center collaborative research effort to improve CP treatments and outcomes.

CPRN leadership team members Bailes, Gannotti, Gross and Narayanan answer questions

CPRN leadership team members Bailes, Gannotti, Gross and Narayanan answer questions at information session at AACPDM meeting.

To build a research network requires team work and CPRN has assembled an experienced and committed group with its CPRN leaders. At the session, team members Amy Bailes, PhD PT MS, PCS, Mary Ganotti, PhD PT and Unni Narayanan, MBBS, M.Sc. FRCS(C) joined Gross for a Q&A session in a packed room with over 50 people on Friday evening.

The group discussed anticipated milestones, how to participate in CPRN, charter membership and how its Common Data Model (CDM) relates to the AACPDM effort to create Common Data Elements (CDE). Attendees from Nationwide Children’s Hospital emphasized the productivity gains from their use of Epic for the collection registry data. Information session attendees expressed a high degree of interest in participating in the CPRN registry. To receive CPRN updates, please follow by submitting your email address for alerts or contact info@cpresearch.net for more information.

Cerebral Palsy Common Data Model Reviewed

The participants in the Cerebral Palsy Research Network (CPRN) completed a cross discipline review of the CPRN registry’s cerebral palsy Common Data Model (CDM) last week. The CDM consists of all of the data elements that have been defined by each of the four discipline groups – non-surgical doctors (developmental pediatricians, neurologists and physiatrists), orthopedic surgeons, neurosurgeons and the physical and occupational therapists. These data elements will be collected as a part of routine clinical visits and surgical interventions for cerebral palsy at participating CPRN sites and form the basis for the CPRN registry. These planned 200 data elements characterize the patient and the interventions (medical, surgical and therapeutic). An additional set of data elements will be entered by the patients and caregivers filling out surveys that characterize patient outcomes.

This milestone is significant for CPRN as it enables the CPRN registry database to be built. Over the coming weeks, the final qualifications will be defined for these elements – data types and ranges – that assure high quality data collection and reliability. Completion of this step enables the creation of the front-end data collection system that will be hosted by the electronic medical record (EMR) system at participating CPRN centers. Both the front end and back end systems are planned for creation in November clearing the path to pilot the CPRN registry in early 2016.

Cerebral Palsy Common Data Model Review

CPRN Data Coordinating Center Staff

CPRN Data Coordinating Center staff led by Dr. Susan Horn

Cerebral Palsy Research Network (CPRN) founder Paul Gross met today with the CPRN Data Coordinating Center staff led by Dr. Susan Horn to review the CPRN Registry Common Data Model. The group reviewed the data elements that have been developed by the CPRN subspecialty groups for demographics, diagnosis, orthopedic surgery, neurosurgery, physical and occupational therapy. The DCC staff also presented the proposed database design to capture the CPRN registry data elements. Significant progress was made on database design, platform selection, integration with the National Institutes of Health Common Data Elements project, data flow between clinical sites and the DCC, and plans for a patient powered registry. The CPRN DCC staff is on track to complete the registry database design in October which will pave the way for the data collection form development that is planned.

The meeting was capped by a brainstorming session with the Health Systems Innovation Research (HSIR) program leader Dr. Rachel Hess. Dr. Hess, who is involved in PCORI’s learning health systems that are part of PCORNet, was excited by the team’s progress. Dr. Hess, Dr. Horn and Mr. Gross generated new ideas on how to maximize the research opportunities presented by the CPRN registry.

Come see CPRN at AACPDM

CPRN founder Paul Gross and network leaders Dr. Unni Narayanan, Amy Bailes, and Mary Gannotti, will be hosting an informational session about the status of and participation in the Cerebral Palsy Research Network at the AACPDM meeting on Friday, October 23rd at 6 pm (location TBA). We will share information about the progress of the network, the CPRN registry development, planned studies, data collection plans, patient reported outcomes and opportunities to participate in the pilot phase of the CPRN registry. All AACPDM attendees are welcome — no prior involvement in CPRN is necessary!

Enhancing Surgical Decision Making in Cerebral Palsy

On July 30th, the Cerebral Palsy Research Network (CPRN) submitted its first application for funding for a CP study entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study” to the Patient Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Rich Stevenson of the University of Virgina, brought together the leadership team of CPRN (Dr. Amy Bailes, Paul Gross, Dr. Susan Horn, Dr. Unni Narayanan, Dr. Garey Noritz and Dr. Jerry Oakes) along with Dr. Diane Damiano from the National Institutes of Health Clinical Center and patient advocate Michele Shusterman of CP Daily Living as investigators. This multi-center observational study will enroll 2500 patients from 18 of the CPRN Network sites to study practice variation and outcomes for lower extremity surgery including orthopedic surgeries and neurosurgery for children with CP. The need for comparative effectiveness research was identified as a key outcome from the NIH Workshop entitled “State of Science and Treatment Decisions in Cerebral Palsy” in November 2014.

You can read an overview of the study on our research page entitled Surgical Decision Making in Cerebral Palsy Study.

Adult cerebral palsy outcomes to be added to CPRN registry

The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the effort to determine how to advance the study of outcomes of adults with CP. After examining which data sources might be most amenable to the study of adults, Dr’s Gannotti and Thorpe approached the leadership of CPRN to inquire about expanding the CPRN registry to include adults with CP. Given the number of CPRN participants that also treat adults and the importance of outcomes in the adult population, the CPRN leadership team invited Dr’s Gannotti and Thorpe to join CPRN and lead the effort to define the adult aspects of the CPRN registry.

Dr. Gannotti will join the leadership team and work with Dr. Thorpe to build an interdisciplinary team of clinicians to define the adult registry extensions and outcome measures. CPRN sites that treat adults will be able to enroll adult patients in the registry as part of their clinic.

Cerebral Palsy Therapy Registry Completed

The physical and occupational therapy subspecialty group finished their initial data element definition on Tuesday, July 14, 2015.  The group, led by CPRN network leader Dr. Amy Bailes, a physical therapist at Cincinnati Children’s Hospital, consisted of Dr. Bailes and eight therapists who treat CP in North America including:

  • Dr. Kristie Bjornson, Seattle Children’s Hospital
  • Dr. Mary Gannotti, University of Hartford
  • Marcia B. Greenberg, UCLA
  • Dr. Karen Harpster, Cincinnati Children’s Hospital
  • Christopher F. Joseph, Kennedy Krieger Institute
  • Dr. Linda Lowes, Nationwide Children’s Hospital
  • Teressa Reidy, Kennedy Krieger Institute
  • Andrea Todd, Nationwide Children’s Hospital

The group has met consistently every other week since April 28th to define the important therapy data to collect during a team clinic visit for individuals with cerebral palsy.  The cerebral palsy therapy registry core will provide important data points about the role of therapy in outcomes in CP.

Cerebral Palsy Orthopedics Registry Completed

The orthopedic surgery subspecialty group finished their initial data element definition on Wednesday, July 8, 2015. The group, led by CPRN network leader Dr. Unni Narayanan, an orthopedic surgeon at the Hospital for Sick Children, consisted of Dr. Narayanan and ten surgeons who treat CP in North America including:

  • Dr. Benjamin Shore, Boston Children’s Hospital
  • Dr. David Roye, Columbia University
  • Dr. Freeman Miller, A.I. Dupont Hospital for Children
  • Dr. Hank Chambers, Rady Children’s Hospital
  • Dr. James McCarthy, Cincinnati Children’s Hospital
  • Dr. Jon R. Davids, Shiners of Northern California
  • Dr. Laura Gill, Nationwide Children’s Hospital
  • Dr. Mark Romness, University of Virginia
  • Dr. Tom Novacheck, Gillette Children’s Hospital
  • Dr. William Oppenheim, University of California, Los Angeles

The group has met consistently every other week since May 13th to define the important data to collect for the cerebral palsy orthopedic interventions. Starting from other established orthopedic registries and current studies, the group focused on which data elements could be leveraged. The surgeons then determined the remaining fields necessary to make a common data model for this aspect of the registry. The cerebral palsy orthopedics registry core will provide a significant base of data for future quality improvement studies and study planning for CPRN.