QLTI-17. Implementing a centralized, institution-wide neuro-oncology database to advance precision neuro-oncology and multidisciplinary research

BACKGROUND The rarity of some CNS neoplasms and molecular subgroups leads to a lack of prospective clinical trial data on novel targeted therapies. As a result, high-quality and accessible clinical-genomic, real-world data (RWD) have become essential for advancing knowledge and improving practice in precision neuro-oncology. However, such data are often fragmented across clinical teams and systems, leading to inconsistent documentation, siloed databases, and missing data. To address these challenges, we developed NODE (Neuro-Oncology Database Enhanced), a centralized, multidisciplinary database compliant with our institutional Precision Oncology Core Data Model (Precision-DM). METHODS We identified four legacy databases across our neuro-oncology program and harmonized both core and non-standardized data elements guided by a neuro-oncology-specific version of Precision-DM, originally designed to standardize data collection for the Johns Hopkins Molecular Tumor Board. The resulting data structure was implemented in REDCap as NODE, starting with the migration of legacy patient data from 2017 onward, followed by a transition to prospective data entry. An automated clinical data pull was enabled for select REDCap fields and a structured form was developed in EPIC to support prospective capture of disease status. Retrospective data curation involved standardized manual review, with diagnoses updated to the WHO 2021 classification by a neuropathologist. RESULTS NODE captures longitudinal clinical and genomic data across 9 structured REDCap forms spanning demographics, comorbidities, pathology, genomics, treatment, imaging, and disease status. To date, over 900 patient cases have been entered into NODE, which is actively used by multidisciplinary teams for retrospective analyses and feasibility assessments in molecularly defined neuro-oncology cohorts. NODE has supported 4 peer-reviewed publications, 5 ongoing research projects, and 1 grant application. CONCLUSIONS NODE facilitates high-quality capture of clinical-genomic RWD to support precision-focused research in our neuro-oncology program. Our initiatives tackle data integration and standardization challenges and serve as a model for similar efforts across institutions.