Abstract
BACKGROUND
Neoplastic meningitis (NM) is a devastating complication of both hematologic and solid tumors, with a dismal prognosis. NM can present with a variety of symptoms, prognostic features are still debated, and treatment options vary based on disease status and differences in institutional protocols. AIM: NeMeRe: a Multi-Institutional Retrospective and Prospective Registry of Neoplastic Meningitis in Adults is an electronic clinical data registry that captures information regarding cancer history, diagnoses, treatments, and survival rates from patients with NM to provide an inclusive picture of disease status and management.
METHODS
The registry was designed in REDCap by the Office of Patient Oriented-Research in the Penn State College of Medicine Department of Neurosurgery. Implemented in 2017, NeMeRe currently has nine international sites entering retrospective and prospective data, 480 patients currently enrolled, and new sites are continually applying for access.
RESULTS
Data analysis reports are generated to explore the relationships between disease characteristics, comorbidities, and therapies, and enables researchers to investigate a large number of real-world diagnostic, prognostic, and therapeutic questions with greater agility and without the costs and inefficiencies of randomized controlled trials, which have proven challenging in this disease. By adding the features of data entry verification and propensity score matching, registry studies also provide results which are nearly as reliable as RCTs The dynamic nature of clinical registries also allows researchers to suggest edits to the database that reflect real time changes in practice. The authors will present several examples of such studies.
CONCLUSION
NeMeRe is a database with the potential to answer critical questions about an increasingly common disease that has been very challenging to study using more traditional clinical trial paradigms.