Happy New Year from all of us in the Cerebral Palsy Research Network (CPRN)! CPRN forged ahead in 2018 on the plans as laid out in the 2017 year-in-review blog post with numerous goals accomplished. The biggest highlights for the year included:
- Three million dollars in NIH funding for Dr. Michael Kruer’s R01 grant entitled “Genomic insights into the neurobiology of CP.”
- Two-hundred thousand dollars in funding from the Pediatric Epilepsy Research Foundation for Dr. Adam Ostendorf’s research entitled “Enhancing a Multidisciplinary Research Network for Research and Quality in Epilepsy and Cerebral Palsy.”
- The open-access publication of our Research CP initiative in Developmental Medicine and Child Neurology entitled “Setting a Patient-Centered Research Agenda for Cerebral Palsy.”
- Completion of one year of data collection from three centers in our quality improvement protocol to reduce infections in intrathecal Baclofen pumps.
- Completion of data collection in our practice variation study of selective dorsal rhizotomy and botulinum toxin for spasticity management in spastic diplegics.
- Growth of the clinical CP registry to 2074 patients.
- Our inaugural face-to-face investigator meeting in Houston, TX in May-June 2018.
- Three presentations and increased awareness an the annual AACPDM meeting in Cincinnati in October 2018.
- The addition of two new centers and investigators — Riley Children’s Hospital and Yale University – to the network.
These milestones are all critical steps to advancing our mission to improve outcomes for people with cerebral palsy.
Building Momentum in 2019
We plan to build on these advances in 2019 starting in January with a webinar: How to Partner with CPRN to conduct Multi-center Trials on January 17 plus we have scheduled several abstract submissions to AACPDM for its annual meeting by January 31.
We also will continue to engage the broader community through a public webinar on the results of Research CP. This webinar will be linked with the launch of our community registry which will allow people with CP and their caregivers to actively participate in research through surveys on the web and mobile phones.
Our next face-to-face investigator meeting, hosted by Executive Committee member Dr. Ed Hurvitz, is planned for early May in Ann Arbor, Michigan. Several study analyses and manuscripts are planned for the year and an expanded presence for CPRN at AACPDM in Anaheim. Finally, we expect several more sites to join the network in 2019 and hence will be expanding our footprint and data collection for the clinical registry.
We would like to thank the investigators that volunteer their time to advance the work of CPRN for:
- submitting protocols to their institutional review boards,
- prodding information technology departments to implement the registry, and
- encouraging their multi-discipline partners to participate in collecting the data in CPRN useable formats!
We also wish to thank our community advisors and the CP community for keeping us honest, staying engaged and spreading the word about the CPRN mission. We wish you all the best in 2019!