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Overview

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.

CPRN Chairman and Founder, Paul Gross is joined by Nationwide Children’s Chief Medical Information Officer, Dr. Jeff Hoffman and CP Program Director, Dr. Garey Noritz, to demonstrate how CPRN data collection works through Epic.

CPRN founder Paul Gross, Data Coordinating Center principal investigator Dr. Jacob Kean and CPRN PI Dr. Michael Kruer discuss the assets, benefits and process to partner with the network to conduct multi-center research and quality improvement in cerebral palsy.

This webinar features CPRN chairman and founder Paul Gross describing a brief background of CPRN and then detailing the steps necessary to become a member of the network.

Research CP

This webinar provides an overview of the planned Research CP initiative to set a patient-centered research agenda for cerebral palsy. The webinar was developed as a collaboration between CPRN and CP NOW. The webinar features CPRN founder Paul Gross and Dr. Ed Hurvitz of University of Michigan.

This webinar describes different aspects of clinical research and comparative effectiveness research. Dr. Susan Horn of the University of Utah presents this valuable information along with a methodology called Practice Based Evidence.

This webinar describes Quality Improvement as a methodology and features Dr. Amy Bailes of Cincinnati Children’s Hospital.

This webinar features Dr. Jacob Kean of the University of Utah talking about the shift to patient-centered research and using patient reported outcome measures.

This webinar describes the research benefits of various types of patient registries. It features Dr. Jay Riva-Cambrin of the Hydrocephalus Clinical Research Network (HCRN) and Megan O’Boyle of Principal Investigator for the Phelan McDermid Syndrome International Research Registry. It also covers the types of registries supported by CPRN.

Research CP Dystonia Edition

This webinar is the first in a three part series for the CPRN/CP NOW Research CP “Dystonia Edition” initiative to set a patient centered research agenda for dystonia in CP presented by Paul Gross and Bhooma Aravamuthan, MD DPhil, a pediatric neurologist from St. Louis Children’s Hospital and Washington University.

Dr. Darcy Fehlings, Professor of Pediatrics at University of Toronto, explains the Care Pathway for Dystonia in Cerebral Palsy and the creation and use of the Hypertonia Assessment Tool (HA).

Michael Kruer, MD, talks about current research and gaps in treatment for dystonia in cerebral palsy in this third webinar in Research CP Dystonia Edition — an initiative to set a patient-centered research agenda for CP.

MyCP Webinar Series

#1: In the first of the MyCP webinar series, Dr. Mary Gannotti, a Professor at University of Hartford and the co-leader of the Cerebral Palsy Research Network’s adult study group, presents the preliminary findings from the CPRN adult registry.

#2: Dr. Garey Noritz, a developmental pediatrician and internist at Nationwide Children’s Hospital, gives a community focused update on the CPRN Cerebral Palsy Registry.

#3: Dr. Adam Ostendorf, pediatric neurologist from Nationwide Children’s Hospital and principal investigator for the CPRN epilepsy study group presents the findings about people with CP and epilepsy from the CPRN registry.

#4: Paul Gross describes CPRN’s qualitative study of practice variation in the management of spastic diplegia and also provides quantitative data from the CPRN CP Registry.
#5: Author and mother Lily Collison is interviewed about her book Spastic Diplegia — Bilateral Cerebral Palsy.
#6: Dr. Michael Kruer describes his research into the genetics of cerebral palsy.