In the past few years, the NeuroPoint Alliance (NPA) has established a number of coordinated multi-specialty society registry efforts. Recent efforts include the SRS registry project developed with the American Society for Radiation Oncology (ASTRO) to define national patterns of care in radiosurgery and a collaborative clinical registry with the American Academy of Physical Medicine and Rehabilitation (AAPM&R) to serve patients who are suffering from a variety of spinal disorders that are treated through surgical and non-surgical options.
NPA continues to actively explore additional opportunities to establish collaborative registry projects with various organizations for cross-specialty patient-focused care. Recent discussions were held with the Society of NeuroInterventional Surgery (SNIS) and the Joint Cerebrovascular Section of the AANS/CNS about the development of an endovascular registry that will expand quality improvement and patient safety capabilities while building capacity to support a variety of new initiatives. Among these initiatives is an anticipated project to provide regulatory-grade, pre- and post-market data services to the FDA to evaluate the real world effectiveness of new devices and techniques. The NeuroVascular Quality Initiative (NVQI/SNIS) and QOD-Neurovascular (NPA) registries are poised to facilitate aspects of these types of projects as part of a coordinated registry network, while eliminating duplication of effort.
Further expanding on a solid foundation of data collection expertise, variable identification and patient reported outcomes, the NPA is assisting with the development of a business plan for a multidisciplinary deep brain stimulation (DBS) registry for Parkinson’s disease. The Functional Neurosurgical Working Group (FNSWG) of the Parkinson Study Group (PSG) is engaging various stakeholders to develop a registry project proposal with grant support from the Michael J. Fox Foundation. This project also includes the development of a credentialing process for investigators.
Many new endeavors and developments are on the horizon for NPA. If you or your institution is interested in learning more about NPA or becoming a participant, click here to access the NPA website or email [email protected].
