Entries by Paul

NIH Plans CP Research Workshop in Basic and Translational Science

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 Replay: Got EMR? Is Available on CPRN

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 Institutions Interested in CPRN Membership

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…

Webinar: Got EMR? Improve Clinical Efficiency while Supporting Clinical Research in Cerebral Palsy

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…

Nationwide Children’s and CPRN Review Cerebral Palsy Common Data Model

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…

Patient Advocate Michele Shusterman to Join CPRN Leadership Team

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….

Join the Cerebral Palsy Research Network

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…

Cerebral Palsy Common Data Model Reviewed

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 Common Data Model Review

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….

Come see CPRN at AACPDM

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…