Webinar: Paul Gross, CPRN Founder, explains how CPRN was founded. Mr. Gross received the “Making a Difference” Award from the American Academy for Cerebral Palsy and Developmental Medicine at their 69th annual meeting in October 2015. He described his experience with the early birth trauma of his son and subsequent journey that led him to co-found the Hydrocephalus Clinical Research Network (www.hcrn.org) and subsequently the Cerebral Palsy Research Network (www.cpresearch.net). His talk, entitled “From Anxiety to Impact: Focusing Parental Anxiety on Advancing Research,” was recorded and is posted here in full. In this 20 minute speech, Mr. Gross not only describes his prior experience that led him to founding the network but also describes the mission, vision and status of CPRN as of mid October 2015. Webinar: Paul Gross describes the founding and current status of CPRN as of June 2016. This particular webinar explains the role of patients, caregivers and the CP community in the operations of CPRN.
Webinar: Listen to Dr. John Kestle give an overview about our previous experience building a multi-center, collaborative research. CPRN founder Paul Gross and Dr. John Kestle co-founded the Hydrocephalus Clinical Research Network in 2006. Gross and Kestle met at the first NIH Workshop on hydrocephalus. Kestle, a leader in the field of clinical trials for hydrocephalus, describes HCRN’s founding, structure and impact. Viewers of this webinar will come away with a distinct understanding of the benefits of multi-center collaborative research. The core presentation content is 20 minutes followed by an additional 30 minutes of Q&A.
Webinar: How will CPRN integrate with electronic medical records to capture CP registry data. Dr. Garey Noritz is the Medical Director of the Cerebral Palsy Program at Nationwide Children’s Hospital in Columbus Ohio. Nationwide has been running a single center CP registry called Learn from Every Patient for the past several years. It is unique in that it collects the registry data directly into Nationwide’s Electronic Medical Records (EMR) system as part of the standard delivery of clinical care to patients. Dr. Noritz is a co-founder of CPRN and Nationwide is donating the IT resources to build EMR based forms for CPRN into their system and for other sites in CPRN. This webinar includes not only Dr. Noritz but also Nationwide Children’s Chief Medical Information Officer Dr. Jeffrey Hoffman. CPRN founder Paul Gross introduces the webinar with a quick overview of CPRN. Dr. Noritz demonstrates the use of EMR based flowsheets to gather patient data as part of routine care. The participants go on to answer questions at the end of this 60 minute webinar.
Webinar: University of Virginia’s Dr. Richard Stevenson, M.D. and CPRN Chairman Paul Gross, dual Principal Investigators for a large scale pragmatic trial for cerebral palsy submitted to PCORI, host a webinar to describe the study and application. This webinar and accompanying slide show will give listeners a lay overview of the study objectives, the planned analysis, the involvement of CPRN network sites and the how patient and stakeholders will participate in the research. Investigators presenting in addition to Stevenson and Gross are biostatistician Susan Horn, Ph.D., and patient stakeholder partner liaison Michele Shusterman of CP Daily Living and CP Now Foundation.