NeuroPoint Alliance’s (NPA) Registry for the Advancement of DBS in Parkinson’s Disease (RAD-PD) has successfully completed its Pilot Phase by achieving all data collection goals established at the beginning of registry creation. As the NPA gears up for the next iteration of the project, preliminary data analysis for ongoing funding and the RAD-PD infrastructure will be used for future collaborative efforts. NPA hopes to expand the dataset through future partnerships with DBS and PD stakeholders.
The project was granted funding by the Michael J. Fox Foundation in continued support of the pilot phase of the project, which launched in 2018. The close of this phase signifies the success of the registry in achieving its data collection goals and obtaining 16 actively participating sites, which contributed to the final dataset.
RAD-PD is health effectiveness research focused on measuring and monitoring outcomes in order to secure positive change. This collection of data seeks to comprehensively characterize a cohort of PD patients undergoing DBS surgery, who will be followed longitudinally in order to achieve the project objectives.
Datasets obtained at various intervals of the study:
TIMEFRAME TOTAL
BASELINE 211
SURGERY 178
6-MONTH 88
12-MONTH 48
24-MONTH 6
The Registry for RAD-PD is a quality improvement patient registry in the United States. RAD-PD represents a new era of investigation of DBS therapy in which patient-reported outcomes and clinician-administered rating scales are coupled with a thorough catalog of demographic features, disease-related details, therapeutic methods and characteristics, as well as an imaging repository to create the most comprehensively characterized cohort of individuals undergoing DBS for treatment of PD. Data acquired from study participants will enable the development of a comprehensive database for DBS treatment for PD.
RAD-PD is possible by the concerted efforts of a number of collaborators, including the NeuroPoint Alliance, Inc.; and the Parkinson Study Group and is sponsored by the Michael J. Fox Foundation for Parkinson’s Research.
Registry GoalsThe first project objective is to identify the best practices surrounding DBS therapy in relation to patient selection, surgical procedures, post-operative management, medication management and other longitudinal issues that affect DBS patients. The second goal of the RAD-PD project is to identify the adverse effects and determinants of DBS therapy such as surgical complications, peri-operative changes, long-term device-related issues, falls, hospitalizations and death. The third goal of the RAD-PD project is to identify and examine health economic factors and differences in motor outcomes non-motor outcomes, treatment costs and quality-adjusted life years.
As part of the closure of the pilot phase of the project NPA and the RAD-PD would like to thank all of the participants and patients for their contribution to the registry, for without whom, none of this groundbreaking data would be possible.
For more information, visit www.rad-pd.org/about-rad-pd/.
About NeuroPoint AllianceThe NeuroPoint Alliance (NPA) was established in 2008 to improve the quality of neurosurgical care through the acquisition, analysis and reporting of clinical data via registries and related studies. The NPA is designed to meet the quality improvement and research needs of physicians and allied health care professionals, health care plans, the biomedical industry and government agencies. To accomplish this, NPA spearheads and manages various clinical data registries and studies in the areas of cranial tumors, spine surgery, stereotactic radiosurgery, and neurovascular conditions while providing important sources for the assessment and development of quality of care and research.NPA’s primary objectives include supporting national quality research efforts, including comparative effectiveness; satisfying public reporting requirements for programs, such as the Merit-Based Incentive Payment System (MIPS) through the Centers for Medicare and Medicaid Services (CMS); satisfying practice data collection requirements for ABNS primary certification and Maintenance of Certification (MOC) and providing robust data, such as the Quality Outcomes Database (QOD), formerly known as the National Neurosurgery Quality and Outcomes Database (N2QOD), for structured quality improvement studies.The NPA is supported by the American Association of Neurological Surgeons (AANS), the Neurosurgery Research & Education Foundation (NREF), the Congress of Neurological Surgeons (CNS), the American Board of Neurological Surgery (ABNS), the Society of Neurological Surgeons (SNS) and the AANS/CNS Section on Spine & Peripheral Nerves.
For more information, visit www.neuropoint.org/
