Nationwide Children’s Hospital (NCH), along with Texas Scottish Rite Hospital, are leading the charge to build the CPRN Registry into the Electronic Medical Record (EMR) systems for CPRN. A major milestone for the CPRN EMR forms development was reached today. The forms for non-surgical doctors who treat people with cerebral palsy were released to the…
Leaders, investigators, and advisors from the Cerebral Palsy Research Network (CPRN) are attending the National Institutes of Health (NIH) Workshop on Basic and Translational Research for CP this week on March 24, 2016. CPRN founder Paul Gross, a former National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council member, helped organize the agenda for…
The Cerebral Palsy Research Network (CPRN) posted the initial draft of its cerebral palsy registry forms on the resource page today. The CPRN Registry is intended to define the patient characteristics, interventions and outcomes for people treated for cerebral palsy at the CPRN centers. The data collected in the CPRN Registry will be used for…
The CPRN leadership team held its first face-to-face meeting Sunday, March 13, 2016 in Chicago. We had been working virtually for more than a year via conference calls and email. The opportunity to spend nine hours together in the same room allowed us to make incredible progress working on the strategy and plans rolling out…
The Cerebral Palsy Research Network (CPRN) launched an open resource page today to provide critical information to candidate sites for the network on how to become a future registry site. CPRN launched its Cerebral Palsy Research Network Resources page with the notes and an audio download from a conference call recording from its first Investigator…
The Cerebral Palsy Research Network (CPRN) is excited to announce that it is inviting fourteen new sites to join its six founding institutions. CPRN welcomes the sites and think they will be make valuable contributions to the network. The founding sites include the hospital and universities affiliated with our leadership team: Children’s Hospital of Alabama…
The Cerebral Palsy Research Network (CPRN) completed its adult cerebral palsy registry data elements. The adult planning group formed in July 2015 under the leadership of Mary Gannotti, PT PhD of the University of Hartford and Debbie Thorpe PT PhD of the University of North Carolina Chapel Hill. The diverse team included clinicians, therapists, social…
Members of the CPRN leadership team joined Dr. Rich Stevenson, Principal Investigator for the Enhancing Surgical Decision Making study, in a teleconference with two program directors at Patient Centered Research Outcomes Institute (PCORI) to discuss how to improve the opportunity for funding. CPRN had submitted an application in July, 2015 and learned on January 29,…
The Cerebral Palsy Research Network welcomes Jacob Kean, Ph.D., to the CPRN leadership team and Executive Committee, as the Data Coordinating Center Principal Investigator. Dr. Kean replaces Dr. Susan Horn in this day to day role. Dr. Horn continues to be integrally involved in CPRN as a member of the leadership team and executive committee….
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…
