Deep brain stimulation (DBS) is a surgical treatment for Parkinson's disease (PD) that may benefit those who experience motor complications, such as "off" periods and/or dyskinesia (uncontrolled, involuntary movements). DBS delivers small electrical pulses to the brain to decrease PD movement symptoms. Because DBS continues to evolve as a treatment, the features and outcomes of the therapy vary greatly. It is unclear how to optimize DBS for an individual patient, how effective the therapy is and what socioeconomic impact it has. Because formal clinical trials that would answer these questions are difficult and expensive to conduct, we propose establishing a registry to collect real-life clinical, economic and other information from patients who receive DBS. Such a registry would help improve DBS therapy.
Given the diversity of the information individual patients could provide, the registry will help clinicians and researchers a) understand the clinical and socioeconomic impact of DBS in individuals with PD; b) establish best treatment practices, therapeutic efficacy, and predictors of outcome; and c) better define the course of disease after DBS.
The planning committee for the registry will work with leaders in DBS to design the registry. They will decide what questions to ask participants; how many people treated with DBS should contribute to the registry; what information will be collected; and how information will be collected, stored and used. Afterward, a final protocol for a DBS registry in PD will be created.
Impact on Diagnosis/Treatment of Parkinson's disease:
Once implemented, the registry will help researchers determine the optimal treatment for and impact of DBS in both common and unique cases. It also may help predict DBS success and identify a typical course of PD after treatment.
Next Steps for Development:
After the registry protocol is created, it will start accepting patient information at several clinical centers. The registry is designed to grow with time to include other clinical centers and answer additional clinical questions.