This is a bittersweet time for me. After leading the clinical data management and outcomes assessment efforts for the AANS for two decades, first as Chair of the Outcomes Committee, then as the Chair of the NeuroKnowledge program and for the last 10 years leading the NeuroPoint Alliance (NPA), this will be my last annual report. I am happy to say that I leave the NPA in excellent hands, with Dr. Jack Knightly as the new Chair of the NPA Board of Directors and Irene Zyung, Michele Anderson and Ashley Logan as the outstanding NPA leadership and staff in the AANS offices.
The NPA, a not-for-profit 501(c)(6) corporation, was launched in 2008 to shepherd a variety of national projects involving the acquisition, analysis and reporting of clinical data from neurosurgical practices using online technologies. The NPA has developed and maintained registries and related projects. The NPA leadership and staff have positioned the organization as the premier clinical research resource for organized neurosurgery by improving the current registry experience, establishing more structured and systematic processes and partnering with government agencies, payers and industry to advance registry science.
In September 2018, the NPA engaged in first round strategic planning to examine and reformulate its vision, mission, and goals. Key considerations include assessing whether to partner with a technical vendor or develop some or all capabilities in-house. The NPA will resume more in-depth strategic planning this summer to assess market conditions, including customer experience, competitors and industry responses.
Quality Outcomes Database (QOD)
The QOD Spine is comprised of three modules on lumbar, cervical and deformity spine surgery. As of January 3, 2019, over 115,000 patients had been enrolled in the QOD Spine registries across 80 participating lumbar, 71 cervical and 54 deformity centers in 36 states. The QOD Spine module is the largest spine registry program in North America and is continuing to grow. Recruitment efforts continue to focus on large hospital and academic health systems. The QOD Spine program received approval as a Qualified Clinical Data Registry (QCDR) for the Centers for Medicare & Medicaid Services (CMS) Merit-Based Incentive Payment System (MIPS) for 2018. The 2018 QOD QCDR provides 16 spine specialty-specific measures that can be used to report MIPS Quality Data to CMS. Because very few neurosurgeons made use of this program we will discontinue the QCDR offering after the 2019 program year.
The QOD Neurovascular (QOD-NV) registry is a more recent effort of the NPA, with more than 5,000 patients enrolled at 26 sites by the end of 2018. In December 2018, the NPA and Society of NeuroInterventional Surgery (SNIS) signed a memorandum of understanding to combine their respective neurovascular registries in response to a call from the Food and Drug Administration (FDA) for post-market surveillance of embolectomy devices for the treatment of acute ischemic stroke. The QOD-NV registry will sunset, and data elements from QOD-NV will be added to the SNIS Neurovascular Quality Initiative(NVQI) registry, which is established as a Patient Safety Organization. Former QOD-NV participating centers will be invited to join the new NVQI-QOD NV registry, thereby increasing the total number of combined centers to over 50.
The QOD Tumor pilot registry kicked off in January 2019 with eight sites. This registry was developed by the AANS/CNS Tumor Section and approved by the QOD Scientific Committee. The registry includes cranial ICD-10 and CPT Codes and PROMIS measures to assess outcomes.
Effectiveness of Grade I Spondylolisthesis Study
The study, Effectiveness of Grade I Spondylolisthesis, takes a cohort of 12 QOD participating sites to compare surgical treatment of spondylolisthesis with and without fusion. Data from July 1, 2014, through June 30, 2016, were analyzed and a manuscript is being prepared. Over the past year, abstracts and 15-20 oral/poster presentations have been accepted nationally and internationally, including two podium presentations at large neurosurgical national meetings, have been generated from this work. The study was supported by a grant of $560,000 from Medtronic and DePuy-Synthes.
AANS Stereotactic Radiosurgery (SRS) Registry
In 2015, the SRS registry was launched to define national patterns of care in radiosurgery, to improve health care outcomes, support informed decision making and lower costs. In December 2018, the NPA and Brainlab signed an agreement to renew the grant for three additional years. During this next phase, the NPA and Brainlab will jointly provide more comprehensive operational and technical support. The registry currently has 22 active sites with 2,544 patients enrolled.
Registry for the Advancement of Deep Brain Stimulation in Parkinson’s Disease (RAD-PD)
The RAD-PD was developed by the Parkinson’s Steering Group with funding from the Michael J. Fox Foundation and oversight by a steering committee comprised of five lead physician investigators from neurology and neurosurgery. The NPA serves as a subcontractor to provide registry management. Thirty-two sites have been invited to participate in competitive enrollment with seven tier 1 sites and three tier 2 sites in the first and second years. Sites will enroll their first patients upon completion of the site agreements, IRB review and training.
NPA CME Course
The NPA has hosted two annual courses, The NeuroPoint Alliance and Your Practice: Using Registries to Enhance Quality, Reimbursement, Certification and Clinical Research, at the AANS Annual Scientific Meeting. The course reviews the use of registries in payer negotiations and alternative payment models, as a research platform and quality improvement tool and as tools for Board certification processes. We also cover how to work with other specialties and with industry and government partners and methods to improve data collection and analysis. Registration discounts are offered to current participants in NPA registries.
The NPA is in excellent shape. Many thanks to the NPA’s diligent volunteer members, outstanding staff and busy participating centers for their tremendous efforts and for the opportunity to lead this organization for many years. I am truly grateful. The best is yet to come.
Robert E. Harbaugh, MD, FAANS