Launching the Quality Outcomes Database Tumor Registry: rationale, development, and pilot data

• Published in: Journal of neurosurgery Vol. 136; no. 2; p. 369
• Main Authors: Asher, Anthony L, Khalafallah, Adham M, Mukherjee, Debraj, Alvi, Mohammed Ali, Yolcu, Yagiz U, Khan, Inamullah, Pennings, Jacquelyn S, Davidson, Claudia A, Archer, Kristin R, Moshel, Yaron A, Knightly, John, Roguski, Marie, Zacharia, Brad E, Harbaugh, Robert E, Kalkanis, Steven N, Bydon, Mohamad
• Format: Journal Article
• Language: English
• Published: United States 01.02.2022
• Subjects: Brain Neoplasms - surgery; Glioma; Humans; Meningeal Neoplasms; Pilot Projects; Registries; United States; United States; registry; tumor; oncology; Quality Outcomes Database
• ISSN: 1933-0693
• DOI: 10.3171/2021.1.JNS201115

Neurosurgeons generate an enormous amount of data daily. Within these data lie rigorous, valid, and reproducible evidence. Such evidence can facilitate healthcare reform and improve quality of care. To measure the quality of care provided objectively, evaluating the safety and efficacy of clinical activities should occur in real time. Registries must be constructed and collected data analyzed with the precision akin to that of randomized clinical trials to accomplish this goal. The Quality Outcomes Database (QOD) Tumor Registry was launched in February 2019 with 8 sites in its initial 1-year pilot phase. The Tumor Registry was proposed by the AANS/CNS Tumor Section and approved by the QOD Scientific Committee in the fall of 2018. The initial pilot phase aimed to assess the feasibility of collecting outcomes data from 8 academic practices across the United States; these outcomes included length of stay, discharge disposition, and inpatient complications. As of November 2019, 923 eligible patients have been entered, with the following subsets: intracranial metastasis (17.3%, n = 160), high-grade glioma (18.5%, n = 171), low-grade glioma (6%, n = 55), meningioma (20%, n = 184), pituitary tumor (14.3%, n = 132), and other intracranial tumor (24%, n = 221). The authors have demonstrated here, as a pilot study, the feasibility of documenting demographic, clinical, operative, and patient-reported outcome characteristics longitudinally for 6 common intracranial tumor types.