The Registry for the Advancement of Deep Brain Stimulation (DBS) Therapy in Parkinson’s Disease (RAD-PD) is a quality improvement effort focused on deep brain stimulation therapy and outcomes for Parkinson’s disease (PD) patients. Although evidence favors DBS for the treatment of motor complications due to idiopathic PD, the variability of outcomes are not fully understood, best practices are not well-defined and prospective, long-term health economics data and comparisons of treatment techniques are currently lacking. This real-word observational quality improvement two-year pilot has the potential to answer clinical questions limited by standard randomized controlled methodology for DBS.
The NPA manages this registry and Neurotargeting, LLC, provides the technical platform. The registry partners are the Parkinson Study Group, Neuropoint Alliance and Neurotargeting. The financial sponsor is the Michael J. Fox Foundation. Development of the registry included representation from neurology, neuropsychology, neurosurgery, industry representatives and patient advocates.
The RAD-PD patient registry launched in the fall of 2018 and the first registry patient was enrolled in March 2019. The registry has 10 participating centers and looks to activate 10 additional centers in October 2019. If all sites meet the minimum patient enrollment goal, at least 474 patient will be enrolled in the first two years of the registry.
In June of 2019, the RAD-PD was selected for a poster presentation, a poster tour and Hot Topic presentation at the World Parkinson Congress in Kyoto, Japan.
More details about the RAD-PD registry can be found at https://rad-pd.org/.