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!

Cerebral Palsy Registry Milestone

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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.

CPRN Shares Cerebral Palsy Registry Data Model with the National Institutes of Health

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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.

PCORI Cerebral Palsy Study Decision Imminent

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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.

NIH Plans CP Research Workshop in Basic and Translational Science

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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.

Webinar Replay: Got EMR? Is Available on CPRN

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Paul Gross, CPRN Founder

Paul Gross
CPRN Founder

Garey Noritz, M.D.

Garey Noritz, MD, Nationwide Children’s Hospital Director of Complex Care

Jeffrey Hoffman, MD

Jeffrey Hoffman, MD, Nationwide Children’s Hospital Chief Medical Information Officer

Webinar on EMR usage to improve clinical efficiency while enabling clinical research in cerebral palsy

The Cerebral Palsy Research Network (CPRN) hosted a webinar on December 14, 2015 on its plan to leverage Electronic Medical Records (EMR) platforms to capture the data elements that make up the its CP registry.

This one hour webinar, including Q&A, begins with a brief introduction to CPRN and its current development status by Paul Gross and then is followed by an overview and demonstration of Nationwide’s existing CP registry built directly into its EMR. Dr. Garey Noritz provides an overview their “Learn From Every Patient” initiative and its benefits. Dr. Hoffman then answers questions raised in advance by the webinar registrants. The webinar not only answers key questions about what the experience will be like for clinicians to interact with the EMR during a CP clinic visit while simultaneously capturing core data for the CPRN registry but also answers key IT questions about what Nationwide will develop and share with other CPRN members for their Epic EMR.

Anyone interested in viewing the webinar can see it at: http://tinyurl.com/cprn-webinar-on-emr.

Thanks again to the Hydrocephalus Association for hosting this webinar.

Thirty Institutions Interested in CPRN Membership

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Thirty different universities and hospitals have requested to join the Cerebral Palsy Research Network since CPRN called for applications for charter membership at the end of October 2015. The CPRN leadership team has held numerous conference calls with multi-disciplinary CP clinic teams and chief medical information officers to establish site interest, fit and commitment to piloting the CPRN registry. While charter membership will be limited, with preference given to sites that contributed to the registry development, CPRN plans to allow ALL qualified sites to participate in a phased rollout of the registry in the coming months. CPRN will announce charter memberships and additional mechanisms for participation in January 2016.

Charter members of CPRN will contribute to the development plans for the creation of the network including finalizing the Common Data Model, establishing consent models, initiating submissions to institutional review boards, defining the standard operating procedures of the network and finally piloting the CPRN registry. Charter members will form the initial scientific committee that will plan the research agenda for CPRN. Details about CPRN charter membership can be found in the blog posted entitled Join the Cerebral Palsy Research Network.

Webinar: Got EMR? Improve Clinical Efficiency while Supporting Clinical Research in Cerebral Palsy

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How the CPRN Registry can improve Clinical Research and Practice using EMRs

Garey Noritz, M.D.

Garey Noritz, M.D.

Garey Noritz, M.D., a developmental pediatrician and the Medical Director of the Complex Care Program at Nationwide Children’s Hospital, and Paul Gross, Founder of the Cerebral Palsy Research Network (CPRN), will discuss how the CPRN clinical registry will integrate with the Electronic Medical Record (EMR) platform at participating institutions. In this webinar, Dr. Noritz will demonstrate how Nationwide’s program called “Learn from Every Patient” allows for use of EMR to not only collect registry data during patient visits but also can increase clinical efficiency of its multi-discipline cerebral palsy practice. Gross will describe the planned usage of EMR data collection at CPRN member sites and how the information will be aggregated in the CPRN registry hosted at the University of Utah Data Coordinating Center.

Register today! This webinar will take place on Monday, December 14, 2015 at 6 pm EST, 5 pm CST, 4 pm MST and 3 pm PST. Please sign up in advance and we will send you an invitation with the link to the webinar prior to the date. If you can’t watch it live streaming, the webinar will be recorded for you to watch when you are able.

Nationwide Children’s and CPRN Review Cerebral Palsy Common Data Model

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The Cerebral Palsy Research Network (CPRN) database team and informatics leaders from Nationwide Children’s met by teleconference on Monday, November 2nd, to review the Cerebral Palsy Research Network Registry Common Data Model (CDM). The team from Nationwide Children’s provided excellent suggestions to simplify the CPRN CDM. The CPRN data base team took the action item to refine the CDM from the advice of Nationwide and will deliver a modified CDM. Nationwide will then begin an in-depth comparison of the CPRN CDM to the Nationwide Learn from Every Patient (LFEP) registry that has been operational for several years. This process will allow Nationwide to more rapidly build the front-end flowsheets in Epic to support the new CPRN registry. In addition to advancing the work, this process will allow Nationwide to compare the LFEP data to future datasets from the CPRN registry. After the review is complete, Nationwide will then begin implementation of the Epic flowsheets.

CPRN has committed to share the final Cerebral Palsy Common Data Model on its website as soon as it is completed. The CDM should be complete and shared imminently. The CDM will be available for download and public comment. Nationwide Children’s has committed to sharing the Epic flowsheets with any center that is interested.

Patient Advocate Michele Shusterman to Join CPRN Leadership Team

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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

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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