FEASIBILITY OF LARGE-SCALE SYSTEMATIC DATA COLLECTION IN A QUALITY IMPROVEMENT REGISTRY OF DEEP BRAIN STIMULATION IN PARKINSON’S DISEASE
Recommended Citation
Jimenez-Shahed J, York M, Kirk J, Berg A, Schwalb J, Siddiqui M, and McInerney J. FEASIBILITY OF LARGE-SCALE SYSTEMATIC DATA COLLECTION IN A QUALITY IMPROVEMENT REGISTRY OF DEEP BRAIN STIMULATION IN PARKINSON'S DISEASE. Parkinsonism Relat Disord 2023; 113:21-21.
Document Type
Article
Publication Date
8-1-2023
Publication Title
Parkinsonism and Related Disorders
Abstract
Background: RAD-PD is a multicenter quality improvement patient registry for patients with Parkinson’s disease (PD) who are candidates for deep brain stimulation (DBS) surgery. The project goals are to describe best practices, adverse effects and their determinants, health economics, and disparities in outcome related to DBS treatment.
Methods: In this pilot period, 20 sites were selected and activated. A data repository was built in the Research Electronic Data Capture portal, a secure web application for building and managing online surveys and databases. Patients are recruited from sites’ individual practices when they are considered eligible for consideration of DBS. Sites collect clinically measured scales, disease related information, and demographics into the portal and deploy surveys to patients that include a variety of patient reported outcomes. Data is reviewed for completeness in order to be retained in the registry. Participant information is benchmarked for sites in a study dashboard. Quarterly site calls are conducted to review best practices and data trends. Patient report cards will be distributed at follow-up timepoints.
Results: Since project launch, informed consent has been obtained for >250 individuals with PD. The COVID-19 pandemic has affected site onboarding, subject enrollment and surgical data collection. There are 113 complete baseline datasets, 67 complete surgery datasets, and 18 complete 6-month follow-up datasets. Baseline clinical characteristics of enrolled subjects are heterogeneous. Surgical techniques vary amongst sites. Barriers to data collection are assessed and mitigated in order to streamline workflows and data management efforts.
Conclusions: Longitudinal, standardized multicenter data collection related to DBS treatment in patients with PD is feasible. Data from RAD-PD will generate real world evidence that will improve understanding of factors related to outcomes disparities after DBS.
Volume
113
