The Cerebral Palsy Research Network (CPRN) is approaching its fifth anniversary. Our strategic plan, which was finalized in early 2016, was intended to go through 2020. As we look back, we find that our strategic plan has been a “North Star”, and we have made great progress.
We originally defined three strategic initiatives:
- Foster and conduct high-quality, multi-center multi-discipline quality initiatives and clinical research on cerebral palsy.
- Sustain a world-class multi-center and patient-centered clinical research organization.
- Translate knowledge broadly.
In 2019 we heard from numerous sites that they wanted to participate in our registry with a focus on conducting high quality research and quality improvement. We added Benioff Children’s Hospital Oakland, Children’s Mercy Hospital in Kansas City and Joe DiMaggio Children’s Hospital in Hollywood Florida. These additional sites strengthen the network’s reach and further diversify our registry footprint. We also published our CPRN Registry Elements data dictionary and data transfer specification to further standardize and accelerate our data collection for our CP registry. Enthusiasm to join the network continues to be strong with nine additional sites on track to join in the near future.
To accomplish our second strategic initiative, we established a fiscal structure for CPRN to receive ongoing grant support and participation fees to sustain our work. Our standard operating procedures outlined in a manual that describes how we function as a network, were put to work for the review of study applications and additional manuscripts. And our Community Advisory Committee, which is essential to keeping our work patient-centered, helped shape our research strategy by guiding us to launch two important efforts in 2019 in health care transition for CP and dystonia in CP.
Our research and quality initiatives continue to grow and take shape. Our annual investigator meeting was hosted by the University of Michigan in May 2019. It was a high energy and focused advancement of current and future research projects. We launched our Community Registry and MyCerebralPalsy.org – a consumer facing web portal with a forum, news and opportunities to participate in research — with our first study of adults with cerebral palsy focused on well-being and pain. And this year our registry data led to several presentations and posters featured at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine.
Our network approved four new research concepts from investigators pursuing grant applications that leverage CPRN. These topics included:
- two on spasticity management strategies,
- therapy dosing, and
- the role of body composition.
Our partner CP NOW has committed to funding research that advances the Research CP priorities and leverages the use of CPRN’s resources. This study focuses on the role of speech in participation for children with CP.
We ended the year with our second publication entitled “The Role of Registries in Cerebral Palsy Research” and we received pre-approval from the National Institutes of Health to submit a multi-center $14M study of spasticity interventions in early 2020!
Our research initiatives and infrastructure will continue to advance in 2020 as we turn to planning the next phase of CPRN’s growth and impact. Our third strategic initiative is the most exciting as it is where CPRN can begin to measure its impact on outcomes for people with CP as we seek to “translate knowledge broadly.” Translating means not just publishing results but also putting the tools and techniques into practice in the hospital and community settings. We have established a very broad infrastructure that will allow network sites to implement evidence-based medicine and quality improvement initiatives in the CP clinics at CPRN centers. The CPRN registry will allow us to measure implementation AND track patient outcomes so that we can begin to achieve our mission of improving outcomes for people with CP.
We enter 2020 excited about our vision for the future and energized to make it happen!