Although glioblastoma (GBM) is a fatal primary brain cancer with short median survival of 15 months, a small number of patients survive >5 years after diagnosis; they are known as extreme survivors (ES). Because of their rarity, very little is known about what differentiates these outliers from other patients with GBM. For the purpose of identifying unknown drivers of extreme survivorship in GBM, the ENDURES consortium (ENvironmental Dynamics Underlying Responsive Extreme Survivors of GBM) was developed. 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 histologic parameters. Leveraging our combined resources, the goals of the ENDURES consortium are 2-fold: (1) to build a curated, searchable, multilayered repository housing clinical and outcome data on a large cohort of ES patients with GBM; and (2) to leverage the ENDURES repository for new insights into tumor behavior and novel targets for prolonging survival for all patients with GBM. In this article, the authors review the available literature and discuss what is already known about ES. The authors then describe the creation of their consortium and some preliminary results.
*Mathematical Neuro-Oncology Laboratory, Precision Neurotherapeutics Innovation Program
Departments of §Neurology
¶¶Neurosurgery, Mayo Clinic, Phoenix
##School of Mathematical and Statistical Sciences, Arizona State University, Tempe, AZ
†Department of Radiology, University of Washington
¶Department of Pathology, Neuropathology Division, University of Washington Medical Center, Seattle, WA
Departments of ‡Neurology
††Radiology and Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL
∥Department of Cancer Physiology & Cancer Epidemiology
‡‡Cancer Biology and Evolution Program
§§Cancer Epidemiology Program, Moffitt Cancer Center, Tampa, FL
**Department of Radiation Oncology, Mayo Clinic, Rochester, MN
∥∥Department of Pathology and Cell Biology, Division of Neuropathology, Columbia University School of Medicine, New York, NY
S.K.J. and P.W. contributed equally.
L.W., R.A.G., K.M.E., P.C., and K.R.S.: conceptualized consortium. S.K.J., P.K., N.R., J.S., K.M.E., P.C., and K.R.S.: built consortium. S.K.J., P.W., S.C.M., P.K., A.B.P., and K.M.E.: wrote the manuscript. L.F.G.C., M.M.M., A.H.-D., P.R.J., and L.S.H.: reviewed and edited the manuscript. All authors: contributed to writing, provided feedback, and approved of final manuscript.
Supported by James S. McDonnell Foundation (220020400), NIH (R01CA16437, R01NS060752, U54CA210180, U54CA143970, U54193489, U01CA220378), the Ben & Catherine Ivy Foundation, and the Zicarelli Foundation to K.R.S.
The authors declare no conflicts of interest
Reprints: Kristin R. Swanson, PhD, Mathematical Neuro-Oncology Laboratory, Precision Neurotherapeutics Innovation Program, 5777 East Mayo Blvd, SSB 02-700, Phoenix, AZ 85054. E-mail: firstname.lastname@example.org.