The Cerebral Palsy Research Network (CPRN) turned four years old this summer. The leaders of CPRN came together as a group interested in collaborative cerebral palsy (CP) research with the submission of its first grant application in the summer of 2015. The leadership team initially set out to define a national CP registry but decided a much bolder effort was needed to change the course of CP outcomes for the better. We needed to create a platform to bring researchers and community members together to conduct ground-breaking, high quality research that would build an evidence base for improving treatments and standardize those treatments across a large number of hospitals across North America. As CPRN gears up to submit a large study to the National Institutes of Health this fall, we wanted to reflect on some of our major milestones in each of the last four years. The biggest milestones include:
- Defining a national clinical registry for CP in 2015. This effort was the work of more than 30 clinicians that treat people with CP collaborating to define the patient characteristics and interventions for CP and what outcomes were most important to measure.
- Launching of the CPRN Clinical Registry at our lead site Nationwide Children’s Hospital in April 2016 along with the commitment of 14 charter members sites to join the network and roll out the registry.
- Creating a patient centered research agenda for CP, an initiative entitled Research CP that engaged more than 200 people from the professional and patient community, in 2017. (This effort, funded by an award from the Patient Centered Research Outcomes Institute, was published in Developmental Medicine and Child Neurology in August of 2018).
- Funding in 2018 from the National Institutes of Health to support a CPRN study of the genetics of CP and from the Pediatric Epilepsy Research Foundation to add infrastructure to study epilepsy in CP patients.
These milestones are our biggest accomplishments since we started but the consistent advancement of parts of the network are key to the long-term vision and success. CPRN details its progress here on our blog and provides annual summaries of achievements each January since 2018 (2018 and 2019 years in review). While CPRN has made major progress in its first four years, our work is just beginning to enable changes outcomes for people with CP. We look forward to celebrating those changes with the community in years to come.