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…
The Cerebral Palsy Research Network (CPRN) shared its Common Data Model (CDM) that comprises its forthcoming cerebral palsy registry with the steering committee for National Institutes of Health’s (NIH) effort to standardize cerebral palsy clinical study data. The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and…
The Patient Centered Outcomes Research Institute (PCORI) makes its funding decisions at public meetings of its board of governors. The next PCORI board meeting is scheduled for January 26, 2016 and will include a formal decision on the CPRN/University of Virginia application entitled Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A…
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…
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…
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…
How the CPRN Registry can improve Clinical Research and Practice using EMRs 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…
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…
