Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report
Paul Gross1, Mary Gannotti2, Amy Bailes3
1Department of Population Health Sciences, University of Utah, Salt Lake City, Utah.
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, and universities.
Participants:
More than 100 clinicians, researchers, and consumers and more than 1858 enrollees in the registry.
Main Outcome Measures:
Not applicable.
Results:
Consensus was that the purpose of registry was to (1) quantify practice variation, (2) facilitate quality improvement (QI), and (3) perform 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.
Conclusions:
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.
