Design and implementation of a quality improvement registry for DBS in Parkinson's disease
Jimenez-Shahed J, D'Haese PF, Kirk J, York M, Berg A, Shih L, Schwalb J, and McInerney J. Design and implementation of a quality improvement registry for DBS in Parkinson's disease. J Mov Disord 2019; 34:S10-S11.
J Mov Disord
Objective: To describe the implementation of a quality improvement (QI) patient registry for deep brain stimulation (DBS) in Parkinson's disease (PD). Background: QI projects are a form of health effectiveness research focused on measuring and monitoring outcomes in order to secure positive change. Participating sites share performance on these quality measures and engage in active discussion. Continuous data collection relating to clearly defined quality measures for patients undergoing DBS for PD has not been previously performed. Methods: A multidisciplinary registry planning committee identified core data elements for inclusion in a multi-site registry called RAD-PD. The NIH Common Data Elements, HealthMeasures, International Consortium for Health Outcomes Measurement, MDS Task Force reports, and existing DBS, PD and surgical registries were reviewed. Relevant data elements were selected to minimize site burden and maximize use of patient reported outcomes (PROs). Results: Preliminary benchmarks based on data elements and the registry visit schedule were identified to be dash-boarded to sites. A patient storyboard based on outcome measures and a site performance report based on benchmarks were created within the CranialCloud, a web-based interface which is the data entry portal and repository for RAD-PD. A patient "report card" of individual progress with DBS was created in OUR-DBS, a dedicated patient portal for the registry. A central IRB granted an exemption determination. Conclusion: RAD-PD launched in October 2018 and site onboarding is in progress. It represents a new era of investigation of DBS which couples PROs and clinician-administered rating scales with a thorough catalogue of demographic features, disease-related details, therapeutic methods and characteristics, and an imaging repository to create the most comprehensively characterized cohort of individuals undergoing DBS for PD. The QI framework will allow a unique forum for discussion of best practices and practice challenges, and will empower participating sites to implement and monitor changes in therapeutic delivery.