Entries by Paul

CPRN Releases Preliminary CP Registry Forms

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…

CPRN Leadership Team Meets in the Windy City

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…

CPRN Creates New Cerebral Palsy Registry Resource for Candidate Sites

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…

CPRN Adds Fourteen Charter Member Sites

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…

Adult Cerebral Palsy Registry Completed

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…

CPRN Confers with PCORI staff about application planning

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,…

Dr. Jacob Kean Joins CPRN Leadership Team

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….

Cerebral Palsy Registry Milestone

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…

CPRN Shares Cerebral Palsy Registry Data Model with the National Institutes of Health

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…

PCORI Cerebral Palsy Study Decision Imminent

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…