The Cerebral Palsy Research Network (CPRN), which owns and manages MyCP.org, was founded in the summer of 2015 and has reached its fifth anniversary. Born out of a 2014 workshop organized by the National Institutes of Health (NIH) and first designed to achieve a national registry for cerebral palsy (CP), CPRN has emerged as a multi-focus initiative and one that has given rise to a lasting partnership between the community and clinician researchers to improve outcomes for people with CP.
A 5-year strategic plan created in 2016 led to the realization of the following major milestones:
- Engagement of community, clinical and research stakeholders to set and prioritize a patient-centered research agenda. The engagement was accomplished through the establishment of a Community Advisory Committee and the execution of two patient-centered research setting initiatives called Research CP, the first of which was funded by the Patient Centered Outcomes Research Institute (PCORI). This research agenda guides CPRN’s research focus and is influenced, dynamically, via ongoing community engagement in MyCP.org which was launched in the spring of 2019. MyCP.org is a web portal that provides the community with opportunities to engage in CP research by participating in surveys and/or discussions with clinicians and researchers.
- Establishment of registry infrastructure to accelerate CP research. clinical CP registry and a community CP registry. The clinical registry includes data from more than 4,000 patients from 17 enrolling centers and will grow as more of the 28 centers committed to hosting the registry contribute their patient data. The community registry, where community members register themselves and contribute their data and perspectives on CP, launched in 2019 with the inaugural annual survey of adults with CP. This infrastructure includes two registries: a
- Facilitation of multidisciplinary research collaboration. epilepsy in CP, genetics in CP and speech and language predictors of participation in CP. CPRN has also internally funded five quality improvement initiatives: adult care, dystonia, hip health, intrathecal pump infections, and care transitions, all of which seek to rapidly change clinical processes to improve outcomes for persons with CP. Clinician researchers from multiple disciplines and multiple centers are tackling pressing and patient-centered research questions and quality improvement initiatives designed to improve outcomes for persons with CP. CPRN has submitted multiple grants and has received funding from NIH, PCORI, non-governmental organizations and private foundations for projects such as studying
The next five years promise new centers joining CPRN, more data collection and contribution from existing centers, and the development of many new patient-centered research and quality improvement initiatives. The anticipated growth will advance our development as a Learning Health Network that continuously improves treatments and outcomes for CP through research and quality improvement. Our focus over the next five years will give us more ways to engage the CP community and enhance outcomes locally, nationally and internationally.