Winter 2020 NAACCR Narrative Leave a comment

Using Cancer Registry Data to Estimate Brain Tumor Survival – Ongoing Research and Emerging Collaborations

Carol Kruchko
President & Chief Mission Officer, Central Brain Tumor Registry of the United States (CBTRUS), Hinsdale, Illinois

Quinn T. Ostrom
Postdoctoral Associate, Section of Epidemiology and Population Sciences, Department of Medicine, Baylor College of Medicine, Houston, Texas

Jill S. Barnholtz-Sloan
Scientific Principal Investigator, Central Brain Tumor Registry of the United States (CBTRUS), Hinsdale, Illinois
Professor and Associate Director for Data Sciences/Translational Informatics
Sally S. Morley Designated Professor in Brain Tumor Research
Director, Research Health Analytics and Informatics, University Hospitals Health System
Director, Cleveland Center for Health Outcomes Research, CWRU
Case Western Reserve University School of Medicine & University Hospitals of Cleveland, Cleveland, Ohio


Discussions-Connections-Relationships. No matter what one calls ways of communicating it most often results in change to those individuals or groups involved. And sometimes it results in something positive –and sometimes the positive result is recognized. Recognition came to CBTRUS researcher, Quinn T. Ostrom, PhD.

Fondo Elena Moroni awarded the Enrico Anglesio Prize to Dr. Ostrom for her presentation entitled Relative survival after diagnosis with a primary brain or other CNS tumor in the National Program of Cancer Registries, 2001-2014 during the joint NAACCR / IACR Conference held in Vancouver June 2019. The Enrico Anglesio Prize recognizes a young researcher for original scientific research in cancer epidemiology. Dr. Ostrom received her doctorate in June 2018 and is now a fellow at Baylor College of Medicine in Houston, Texas.

On December 16, 2019, the study was published in Neuro-Oncology Practice (Relative survival after diagnosis with a primary brain or other central nervous system tumor in the National Program of Cancer Registries, 2004 to 2014 published in Neuro-Oncology Practice; DOI: This is the first publication on histology-specific survival patterns in primary brain tumors using the National Program of Cancer Registries (NPCR) Relative Survival Analytic Database. The NPCR survival data included 39 state cancer registries (representing 81% of the US population) for a total of 488,314 primary brain tumor cases.

The availability of these data was based on the long term relationship the Central Brain Tumor Registry of the US (CBTRUS) has with the CDC National Program of Cancer Registries (NPCR). In September 2019 CBTRUS began a second contract with the CDC. This award enables CBTRUS to provide the descriptive epidemiology on primary brain and other central nervous system found in its Statistical Reports. The award also provides CBTRUS with the opportunity to work within the cancer registry community in the United States. It is the connection that provided Dr. Ostrom with the data that resulted in the award. This connection begetted another connection which has generated additional positive results. Dr. Ostrom and another speaker in the NAACCR/IACR session, Dr. Fabio Girardi, MD (Worldwide Trends in Survival From Common Childhood Brain Tumors: A Systematic Review published in JCO Global; DOI:, are both invited speakers to the Brain Tumor Epidemiology Consortium ( Meeting in Lyon, France, June 10-12, 2020. It remains to be seen what other connections will emerge.




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