Abstract
Objective
Along with the increasing interest in real-world evidence in neuro-oncology, the deficiencies of prior population-based and quality registries became evident. The neuro-oncological quality registries of the NeuroPoint Alliance (NPA) focus on neuro-oncological surgery and stereotactic radiosurgery (SRS) and aim to fill the gaps of neuro-oncological practice in quality surveillance and real-world research.
Methods
Herein, we discuss the historical background, design process, and features of the NPA SRS and Tumor QOD registries. The registries’current status and future directions are outlined.
Results
The NPA SRS and Tumor QOD registries were designed based on the principles of prospective multi-institutional data collection, central auditing for data quality, and focus on patient-reported outcomes (PROs). Currently, the registries include over 4,500 and 2,500 patients each, with caseloads comprising predominantly of brain metastases and primary extra-axial tumors, respectively. The registries serve both as a quality surveillance and improvement tool – providing participating sites with adjusted quality reports – and as platforms for real-world research of observational and, potentially, interventional nature. Future directions of the NPA neuro-oncological registries include the functional communications of the two registries and the incorporation of imaging analyses in the workflow of quality assessment and research efforts.
Conclusions
The NPA SRS and Tumor QOD registries are quality registries of unique granularity in terms of surgical variables and postoperative outcomes. They constitute increasingly valuable data sources for real-time quality surveillance of participating sites and real-world research.
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J.P.S., M.B., and A.L.A. conceived the idea behind this research. G.D.M. and K.K. wrote the main manuscript text. All authors reviewed the manuscript.
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Sheehan, J.P., Michalopoulos, G.D., Katsos, K. et al. The NeuroPoint alliance SRS & tumor QOD registries. J Neurooncol 166, 257–264 (2024). https://doi.org/10.1007/s11060-023-04553-7
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DOI: https://doi.org/10.1007/s11060-023-04553-7