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…
Michele Shusterman, founder of CP Daily Living, has recently joined the leadership team of the Cerebral Palsy Research Network (CPRN) to coordinate patient and parent input into the CPRN research agenda. She is the mother of a child with cerebral palsy and a tireless advocate for improved support, education and research for cerebral palsy. Mrs….
Following our introduction at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting last week, several individuals asked us about how to join. As we move from our cerebral palsy registry definition phase to our pilot phase, we are first seeking sites that want to be charter member sites for CPRN before we…
The participants in the Cerebral Palsy Research Network (CPRN) completed a cross discipline review of the CPRN registry’s cerebral palsy Common Data Model (CDM) last week. The CDM consists of all of the data elements that have been defined by each of the four discipline groups – non-surgical doctors (developmental pediatricians, neurologists and physiatrists), orthopedic…
Cerebral Palsy Research Network (CPRN) founder Paul Gross met today with the CPRN Data Coordinating Center staff led by Dr. Susan Horn to review the CPRN Registry Common Data Model. The group reviewed the data elements that have been developed by the CPRN subspecialty groups for demographics, diagnosis, orthopedic surgery, neurosurgery, physical and occupational therapy….
CPRN founder Paul Gross and network leaders Dr. Unni Narayanan, Amy Bailes, and Mary Gannotti, will be hosting an informational session about the status of and participation in the Cerebral Palsy Research Network at the AACPDM meeting on Friday, October 23rd at 6 pm (location TBA). We will share information about the progress of the…
On July 30th, the Cerebral Palsy Research Network (CPRN) submitted its first application for funding for a CP study entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study” to the Patient Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Rich Stevenson of the University of…
The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the…
The physical and occupational therapy subspecialty group finished their initial data element definition on Tuesday, July 14, 2015. The group, led by CPRN network leader Dr. Amy Bailes, a physical therapist at Cincinnati Children’s Hospital, consisted of Dr. Bailes and eight therapists who treat CP in North America including: Dr. Kristie Bjornson, Seattle Children’s Hospital…
