ENvironmental Dynamics Underlying Responsive Extreme Survivors (ENDURES) of Glioblastoma: a Multi-disciplinary Team-based, Multifactorial Analytical Approach

Abstract

Although glioblastoma is a fatal primary brain cancer with a short median survival of 15 months, a small number of patients survive more than 5 years after diagnosis; they are known as extreme survivors (ES). Due to their rarity, very little is known about what differentiates these outliers from other glioblastoma patients. For the purpose of identifying unknown drivers of extreme survivorship in glioblastoma, we developed the ENDURES consortium (ENvironmental Dynamics Underlying Responsive Extreme Survivors of glioblastoma). This consortium is a multicenter collaborative network of investigators focused on the integration of multiple types of clinical data and the creation of patient-specific models of tumor growth informed by radiographic and histological parameters. Leveraging our combined resources, the goals of the ENDURES consortium are two-fold: (1) to build a curated, searchable, multilayered repository housing clinical and outcome data on a large cohort of ES patients with glioblastoma and (2) to leverage the ENDURES repository for new insights on tumor behavior and novel targets for prolonging survival for all glioblastoma patients. In this article, we review the available literature and discuss what is already known about ES. We then describe the creation of our consortium and some of our preliminary results.FundingThis review was financially supported by a grant from the James S. McDonnell FoundationConflicts of InterestThe authors have declared that no conflicts of interest exist.AuthorshipConceptualized consortium: LW, RG, KME, PC, and KRS. Built consortium: SKJ, PK, NR, JS, KME, PC, and KRS. Wrote the manuscript: SKJ, PW, SCM, PK, AP, and KME. Reviewed and edited the manuscript: LFGC, MMM, AHD, PRJ, and LSH. Contributed to writing, provided feedback, and approved of final manuscript: All authors.Link to website for ENDUREShttp://mathematicalneurooncology.org/?page_id=2125

Overview of prognostic factors in adult gliomas

“…For a long time, the "extreme survivors" have baffled researchers and clinicians in the field-these are generally defined as glioblastoma patients who live >5 years with their disease. There is a wide range of variability in the field, but recent survival rates at 5 years are estimated to be close to 10% (44). Patients who live longer are more likely to become extreme survivors, studies have found, with those having reached the 2.5-year mark more likely to survive to 5 years (45,46).…”

“…Patients who live longer are more likely to become extreme survivors, studies have found, with those having reached the 2.5-year mark more likely to survive to 5 years (45,46). Additional studies are trying to focus on these survivors, collecting their numbers across institutions to determine patterns and predictive factors (44).…”