The Cerebral Palsy Research Network (CPRN) received confirmation that the two abstracts that CPRN leaders submitted have been accepted to be presented at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting September 2016. Both abstracts were accepted as Breakfast Seminars and confirm the growing interest of the AACPDM in the work of CPRN.
In the first seminar, Michele Shusterman, patient advocacy leader for CPRN and founder of CP NOW Foundation along with CPRN founder Paul Gross, will present the patient/parent/caregiver survey results that informed CPRN’s recent research study about surgical decision making for children with cerebral palsy. Their talk will be the first public presentation of the survey conducted in the Spring of 2015 that had more than 1,100 respondents. The survey sought to understand the various interventions and alternatives (medical, surgical and therapeutic) that patient families were presented with during a child’s development. The survey results include parent reported outcomes for the decision making process, the challenges, and the results of those interventions.
At the second breakfast seminar, Paul Gross will be joined by CPRN leaders including Dr. Amy Bailes, Dr. Mary Gannotti and Dr. Garey Noritz, to focus on the rollout of the CPRN Registry. The group will present the details of what patient and intervention data will be collected, how it will be collected directly into the hospital’s Electronic Medical Record (EMR) system, how it will be transferred and analyzed by the University of Utah Data Coordinating Center and how Patient Reported Outcomes, for both children and adults, will be integrated into the CPRN Registry. The seminar will also cover the future direction of CPRN with regard to Quality Improvement initiatives and expansion to include other sites.