Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report

Abstract Objective To apply Practice Based Evidence to clinical management of cerebral palsy (CP). The process of establishing purpose, structure, logistics, and elements of a multi-institutional registry and the baseline characteristics of initial enrollees are reported. Design A consensus building process among consumers, clinicians, and researchers used a participatory action process. Setting community, hospitals, universities Participants More than a hundred clinicians, researchers, and consumers and more than 1800 enrollees in registry. Interventions & Main Outcome Measures not applicable Results Consensus was that the purpose of registry was 1) to quantify practice variation, 2) facilitate quality improvement (QI), and 3) comparative effectiveness research (CER). Collecting data during routine clinical care using the electronic medical record was determined to be a sustainable plan for data acquisition and management. Clinicians from multiple disciplines defined salient characteristics of individuals and interventions for the registry elements. The registry was central to the clinical research network and a leadership structure was created. A leading electronic health record platform adopted the registry elements. Twenty-four sites have initiated the data collection process and agreed to export data to the registry. Currently 12 are collecting data. Number of enrollees and characteristics were similar to other population registers. Conclusion This is the first multi-institutional CP registry that contains the patient and treatment characteristics needed for QI and CER. The Cerebral Palsy Research Network Registry Elements are implemented in a versatile electronic platform and minimize burden to clinicians. The resultant registry is available for any institution to participate, and is growing rapidly.