RAD-PD: Registry for the advancement of DBS in Parkinson's disease
Jimenez-Shahed J, Bressman S, Burack M, Farace E, McInerney J, Kirk J, Saunders-Pullman R, Schwalb J, Shih L, Spindler M, Moro E, and York M. RAD-PD: Registry for the advancement of DBS in Parkinson's disease. Neurology 2018; 90(15 Suppl).
Objective: To describe a deep brain stimulation (DBS) registry proposal for the purpose of improving DBS therapy and outcomes for Parkinson's disease (PD) patients. Background: Although considerable evidence favors DBS over continued best medical management when bothersome motor complications are present in PD, variability in outcomes are not well understood, best practices are not welldefined, and prospective, long-term health economics data and comparisons of treatment techniques are lacking. Randomized trials are impractical to investigate these questions. Design/Methods: A survey of potential clinical sites investigated which clinical data are routinely captured. RAD-PD was designed as a quality improvement effort. A large and heterogeneous PD cohort undergoing DBS will be prospectively and comprehensively characterized using a standard assessment battery and image analysis. Clinician-measured and patient reported outcomes and imaging will be gathered from over 1,000 participants at up to 40 clinical sites across 5 years of DBS therapy. Results: Across 25 responding sites, 96% complete an MDS-UPDRS part III, 70-77% complete MDS-UPDRS parts I, II and IV, 91% complete Hoehn and Yahr staging, and 85% complete a MoCA prior to surgery. The majority do not systematically assess non-motor symptoms or impulse control disorders, and only 68% capture the PDQ-39. No respondents assess operative risk or patient satisfaction. A comprehensive set of data elements was devised to be systematically captured and benchmarked for analysis in RAD-PD. Dashboarding to participating sites will enable them to consider implementing changes in therapeutic strategies to improve the quality of DBS care and outcomes for PD patients. Conclusions: RAD-PD is needed to prospectively capture standard and comprehensive assessments in a large PD cohort undergoing DBS, with the primary goal of improving DBS therapy and outcomes. Results will have broad applicability to a range of practice scenarios and patient characteristics and the infrastructure can be applied to other disease states.