The Cerebral Palsy Research Network (CPRN) made significant progress toward its vision of a multi-center collaborative effort to improve outcomes for people with cerebral palsy through high quality research and quality initiatives. It was funded for the first project at the start of the year through an award from the Patient-Centered Outcomes Research Institute (PCORI) to set a patient-centered research agenda for CP – Research CP. This project brought the extended CP community (people with CP, caregivers, clinicians, researchers and advocates) together to have a deep dialogue about what research is most important to the community. We have just submitted the manuscript about Research CP to Developmental Medicine and Child Neurology and hope it will be well received by the editors. Plus, we have invited a group of parents to join the adults on our Community Advisory Committee to make sure that our work is informed and influenced by all the needs of the CP community.
CPRN also saw significant progress in the expansion of its clinical registry from one site to six sites demonstrating our ability collect data both directly from the electronic medical record as well as using “chart abstraction”, i.e., where a clinical research assistant fills in forms by reviewing the medical record. With this expansion, the registry exceeded 1,100 patients enrolled putting it on a growth trajectory to be a significant factor in future CP research. Several other sites are making progress on the implementation of their Epic electronic medical record forms for CPRN which should greatly increase patient enrollment in 2018.
In addition to the registry, CPRN launched its first quality improvement protocol for intrathecal baclofen pumps led by Dr. Rob Bollo of Primary Children’s Hospital. Several clinical studies are in development or seeking funding including:
- a genetics study led by Dr. Michael Kruer of Phoenix Children’s Hospital,
- a supported mobility study led by Dr. Kristie Bjornson of Seattle Children’s Hospital,
- a CP and epilepsy study by Dr. Adam Ostendorf of Nationwide Children’s Hospital,
- surgical disparities in CP by Dr. Kirk Dabney of A.I. duPont and
- spasticity management for diplegics currently led by CPRN chair Paul Gross.
In addition to this research activity, CPRN completed significant components of it infrastructure to enable it to grow, support new studies and produce quality research and manuscripts. The creation of the CPRN Standard Operating Procedures has documented how sites can join CPRN, leverage its research infrastructure to propose new multi-center studies, and develop more robust research through peer-reviewed study designs and manuscripts.
With this progress, CPRN educated critical audiences – most notably the American Academy for Cerebral Palsy and Developmental Medicine membership and numerous directors at the National Institutes of Health – about the opportunity to transform CP research. CPRN would like to thank all the dedicated clinicians, therapists and staff at all the sites for their efforts in making CPRN thrive. In addition, we thank the entire CP community who has championed CPRN and advocated for improved research, treatment and outcomes. We look forward to continued engagement of the community and study progress for 2018.