To describe a quality improvement (QI) framework to improve outcomes from deep brain stimulation (DBS) in Parkinson’s disease (PD).

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. The Registry for the Advancement of DBS in Parkinson’s disease (RAD-PD) was launched in October 2018.

RAD-PD is a multi-center longitudinal patient registry for PD that seeks to identify the best practices for DBS therapy, adverse effects and their determinants, and the health economics and outcomes disparities of DBS. Systematic data collection spans several categories consisting of demographic/social, PD history and medical/surgical interventions, motor function, non-motor symptoms, quality of life and health economics data that will be collected through clinician measured and patient-reported outcomes during routine clinical care at designated time points (baseline, surgery, 6 months, and annually to 5 years).

Benchmarks based on registry visits have been identified and will be dash-boarded to sites to allow discussion of ways to improve DBS treatment processes and patient outcomes. At baseline, benchmarks will pertain to disease characteristics, baseline neuropsychological measures and evaluation procedures that may determine patient selection for DBS. Surgical benchmarks will include risk assessment, operating room procedures, and complications that may affect patient outcomes. Benchmarks during follow-up visits will assess key outcomes, adverse events, quality of life and satisfaction measures that may identify disparities in outcome.