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