The Cerebral Palsy Research Network (CPRN) Registry was featured in the journal Physical Medicine and Rehabilitation Clinics of North America last month. The article, which is CPRN’s second published article, describes the role of patient registries in research and details how the CPRN registry was created to address comparative effectiveness research for cerebral palsy (CP). In addition to the CPRN Clinical Registry, CPRN’s community registry at mycp.org is described for its ability to follow long term patient-reported outcomes. Both of these registries are described in the greater context of the network itself and how the participating centers can leverage these tools to more rapidly conduct high-impact research.
The authors were able to detail not only the registry creation process but also how it has been implemented directly into the electronic health record (EMR) system as a design point. The subsequent inclusion of the CPRN Registry Elements by Epic, a leader provider of EMRs in North America, has eased the broad adoption of the CPRN Registry at leading centers that treat people with CP.
The article closes with a description of Research CP, an initiative funded by the Patient-Centered Outcomes Research Institute, to set a patient-centered research agenda for cerebral palsy that was originally published in Developmental Medicine and Child Neurology in 2018. The content of this article provides an excellent background for the impetus and creation of the Cerebral Palsy Research Network, its underlying research platform and its priorities for future research in CP.