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