Central nervous system tumors in adolescents and young adults: A Society for Neuro-Oncology Consensus Review on diagnosis, management, and future directions

Mary Jane Lim-Fat¹, Julie Bennett^{2

3}, Quinn Ostrom^{4

5}, Mehdi Touat^{6

7}, Enrico Franceschi⁸, Jessica Schulte⁹, Ranjit S Bindra¹⁰, Jason Fangusaro¹¹, Girish Dhall¹², James Nicholson¹³, Sadhana Jackson¹⁴, Tom Belle Davidson¹⁵, Gabriele Calaminus¹⁶, Giles Robinson¹⁷, James R Whittle^{18

19

20}, Peter Hau²¹, Vijay Ramaswamy², Kristian W Pajtler^{22

23

24}, Roberta Rudà²⁵, Nicholas K Foreman²⁶, Shawn L Hervey-Jumper²⁷, Sunit Das²⁸, Peter Dirks²⁹, Wenya Linda Bi³⁰, Annie Huang², Thomas E Merchant³¹, Maryam Fouladi³², Kenneth Aldape³³, Martin J Van den Bent³⁴, Roger J Packer³⁵, Julie J Miller³⁶, David A Reardon³⁷, Susan M Chang³⁸, Daphne Haas-Kogan³⁹, Uri Tabori², Cynthia Hawkins⁴⁰, Michelle Monje^{41

42}, Patrick Y Wen³⁷, Eric Bouffet², Kee Kiat Yeo⁴³

Affiliations

¹ Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Center, University of Toronto, Toronto, Ontario, Canada.
² Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada.
³ Division of Medical Oncology and Hematology, Princess Margaret Cancer Centre, Toronto, Ontario, Canada.
⁴ The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine, Durham, North Carolina, USA.
⁵ Central Brain Tumor Registry of the United States, Hinsdale, Illinois, USA.
⁶ Sorbonne Université, Inserm, CNRS, UMR S 1127, Institut du Cerveau, ICM, AP-HP, Hôpitaux Universitaires La Pitié Salpêtrière - Charles Foix, Service de Neuro-oncologie, Paris, France.
⁷ Department of Neurology, Brigham and Women's Hospital, Boston, Massachusetts, USA.
⁸ Nervous System Medical Oncology Department, IRCCS Istituto delle Scienze Neurologiche di Bologna / AUSL di Bologna, Bologna, Italy.
⁹ Neurosciences Department, University of California San Diego, La Jolla, California, USA.
¹⁰ Department of Therapeutic Radiology, Yale School of Medicine, New Haven, Connecticut, USA.
¹¹ Children's Healthcare of Atlanta, Emory University, and the Aflac Cancer Center, Atlanta, Georgia, USA.
¹² Department of Hematology and Oncology, Children's Hospital Los Angeles, Los Angeles, California, USA.
¹³ Paediatric Oncology, Cambridge University Hospitals and Department of Paediatrics, Cambridge University, UK.
¹⁴ Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, USA.
¹⁵ Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, California, USA.
¹⁶ Paediatric Haematology and Oncology, University Hospital Bonn, Bonn, Germany.
¹⁷ Department of Oncology, Neurobiology and Brain Tumor Program, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
¹⁸ Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
¹⁹ Personalised Oncology Division, WEHI, Parkville, Victoria, Australia.
²⁰ Department of Medical Biology, University of Melbourne, Parkville, Victoria, Australia.
²¹ Department of Neurology and Wilhelm Sander-Neuro-Oncology Unit, Regensburg University Hospital, Regensburg, Germany.
²² Hopp Children's Cancer Center Heidelberg (KiTZ) and National Center for Tumor Diseases (NCT), Heidelberg, Germany.
²³ Division of Pediatric Neuro-oncology, German Cancer Consortium (DKTK), German Cancer Research Center (DKFZ), Heidelberg, Germany.
²⁴ Department of Pediatric Hematology, Oncology and Immunology, Heidelberg University Hospital, Heidelberg, Germany.
²⁵ Division of Neuro-Oncology, Department Neuroscience Rita Levi Montalcini, University of Turin and City of Health and Science University Hospital, Turin, Italy.
²⁶ Center for Cancer and Blood Disorders, Children's Hospital Colorado, Aurora, Colorado, USA.
²⁷ Department of Neurological Surgery, University of California, San Francisco, California, USA.
²⁸ Division of Neurosurgery, Li Ka Shing Knowledge Institute, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.
²⁹ Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, Canada.
³⁰ Department of Neurosurgery, Brigham and Women's Hospital, Boston, Massachusetts, USA.
³¹ Department of Radiation Oncology, St Jude Children's Research Hospital, Memphis, Tennessee, USA.
³² Division of Hematology/Oncology, University of Cincinnati, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
³³ Laboratory of Pathology, National Cancer Institute, Bethesda, Maryland, USA.
³⁴ The Brain Tumor Center, Erasmus MC Cancer Institute, Rotterdam, The Netherlands.
³⁵ Brain Tumor Institute, Gilbert Family Neurofibromatosis Institute, Center for Neuroscience and Behavioral Medicine, Children's National Hospital, Washington, District of Columbia, USA.
³⁶ Center for Neuro-Oncology, Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
³⁷ Center For Neuro-Oncology, Dana-Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts, USA.
³⁸ Division of Neuro-Oncology, Department of Neurological Surgery, University of California, San Francisco, California, USA.
³⁹ Brigham and Women's Hospital, Dana-Farber Cancer Institute, Boston Children's Hospital, Mass General Brigham, Harvard Medical School, Boston, Massachusetts, USA.
⁴⁰ Department of Pathology, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁴¹ Department of Neurology and Neurological Sciences, Stanford University, Stanford, California, USA.
⁴² Howard Hughes Medical Institute, Stanford University, Stanford, California, USA.
⁴³ Department of Pediatric Oncology, Dana Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts, USA.

PMID: 39441704
PMCID: PMC11726256 (available on 2025-10-23)
DOI: 10.1093/neuonc/noae186

Review

Central nervous system tumors in adolescents and young adults: A Society for Neuro-Oncology Consensus Review on diagnosis, management, and future directions

Mary Jane Lim-Fat et al. Neuro Oncol. 2025.

. 2025 Jan 12;27(1):13-32.

doi: 10.1093/neuonc/noae186.

Authors

Affiliations

¹ Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Center, University of Toronto, Toronto, Ontario, Canada.
² Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada.
³ Division of Medical Oncology and Hematology, Princess Margaret Cancer Centre, Toronto, Ontario, Canada.
⁴ The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine, Durham, North Carolina, USA.
⁵ Central Brain Tumor Registry of the United States, Hinsdale, Illinois, USA.
⁶ Sorbonne Université, Inserm, CNRS, UMR S 1127, Institut du Cerveau, ICM, AP-HP, Hôpitaux Universitaires La Pitié Salpêtrière - Charles Foix, Service de Neuro-oncologie, Paris, France.
⁷ Department of Neurology, Brigham and Women's Hospital, Boston, Massachusetts, USA.
⁸ Nervous System Medical Oncology Department, IRCCS Istituto delle Scienze Neurologiche di Bologna / AUSL di Bologna, Bologna, Italy.
⁹ Neurosciences Department, University of California San Diego, La Jolla, California, USA.
¹⁰ Department of Therapeutic Radiology, Yale School of Medicine, New Haven, Connecticut, USA.
¹¹ Children's Healthcare of Atlanta, Emory University, and the Aflac Cancer Center, Atlanta, Georgia, USA.
¹² Department of Hematology and Oncology, Children's Hospital Los Angeles, Los Angeles, California, USA.
¹³ Paediatric Oncology, Cambridge University Hospitals and Department of Paediatrics, Cambridge University, UK.
¹⁴ Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, USA.
¹⁵ Cancer and Blood Disease Institute, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, California, USA.
¹⁶ Paediatric Haematology and Oncology, University Hospital Bonn, Bonn, Germany.
¹⁷ Department of Oncology, Neurobiology and Brain Tumor Program, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
¹⁸ Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
¹⁹ Personalised Oncology Division, WEHI, Parkville, Victoria, Australia.
²⁰ Department of Medical Biology, University of Melbourne, Parkville, Victoria, Australia.
²¹ Department of Neurology and Wilhelm Sander-Neuro-Oncology Unit, Regensburg University Hospital, Regensburg, Germany.
²² Hopp Children's Cancer Center Heidelberg (KiTZ) and National Center for Tumor Diseases (NCT), Heidelberg, Germany.
²³ Division of Pediatric Neuro-oncology, German Cancer Consortium (DKTK), German Cancer Research Center (DKFZ), Heidelberg, Germany.
²⁴ Department of Pediatric Hematology, Oncology and Immunology, Heidelberg University Hospital, Heidelberg, Germany.
²⁵ Division of Neuro-Oncology, Department Neuroscience Rita Levi Montalcini, University of Turin and City of Health and Science University Hospital, Turin, Italy.
²⁶ Center for Cancer and Blood Disorders, Children's Hospital Colorado, Aurora, Colorado, USA.
²⁷ Department of Neurological Surgery, University of California, San Francisco, California, USA.
²⁸ Division of Neurosurgery, Li Ka Shing Knowledge Institute, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.
²⁹ Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, Canada.
³⁰ Department of Neurosurgery, Brigham and Women's Hospital, Boston, Massachusetts, USA.
³¹ Department of Radiation Oncology, St Jude Children's Research Hospital, Memphis, Tennessee, USA.
³² Division of Hematology/Oncology, University of Cincinnati, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
³³ Laboratory of Pathology, National Cancer Institute, Bethesda, Maryland, USA.
³⁴ The Brain Tumor Center, Erasmus MC Cancer Institute, Rotterdam, The Netherlands.
³⁵ Brain Tumor Institute, Gilbert Family Neurofibromatosis Institute, Center for Neuroscience and Behavioral Medicine, Children's National Hospital, Washington, District of Columbia, USA.
³⁶ Center for Neuro-Oncology, Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
³⁷ Center For Neuro-Oncology, Dana-Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts, USA.
³⁸ Division of Neuro-Oncology, Department of Neurological Surgery, University of California, San Francisco, California, USA.
³⁹ Brigham and Women's Hospital, Dana-Farber Cancer Institute, Boston Children's Hospital, Mass General Brigham, Harvard Medical School, Boston, Massachusetts, USA.
⁴⁰ Department of Pathology, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁴¹ Department of Neurology and Neurological Sciences, Stanford University, Stanford, California, USA.
⁴² Howard Hughes Medical Institute, Stanford University, Stanford, California, USA.
⁴³ Department of Pediatric Oncology, Dana Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts, USA.

PMID: 39441704
PMCID: PMC11726256 (available on 2025-10-23)
DOI: 10.1093/neuonc/noae186

Abstract

Adolescents and young adults (AYAs; ages 15-39 years) are a vulnerable population facing challenges in oncological care, including access to specialized care, transition of care, unique tumor biology, and poor representation in clinical trials. Brain tumors are the second most common tumor type in AYA, with malignant brain tumors being the most common cause of cancer-related death. The 2021 WHO Classification for central nervous system (CNS) Tumors highlights the importance of integrated molecular characterization with histologic diagnosis in several tumors relevant to the AYA population. In this position paper from the Society for Neuro-Oncology (SNO), the diagnosis and management of CNS tumors in AYA is reviewed, focusing on the most common tumor types in this population, namely glioma, medulloblastoma, ependymoma, and CNS germ cell tumor. Current challenges and future directions specific to AYA are also highlighted. Finally, possible solutions to address barriers in the care of AYA patients are discussed, emphasizing the need for multidisciplinary and collaborative approaches that span the pediatric and adult paradigms of care, and incorporating advanced molecular testing, targeted therapy, and AYA-centered care.

Keywords: adolescents and young adults; brain tumors; precision medicine; survivorship.

© The Author(s) 2024. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.

PubMed Disclaimer

Conflict of interest statement

M.L.: Advisory Board for Servier, Novocure; M.T.: Consulting or advisory role for Servier, Novocure, NH TherAguix, Resilience, Agios Pharmaceutical, Integragen, and Taiho Oncology; Honoraria from Ono; research funding from Sanofi E.F.: Advisory Board for Incyte and Genenta J.F.: Educational Speaker’s Bureau for DayOne Biopharmaceuticals. R.R.: Advisory board or committee for Servier; Consultancy for Novocure, Servier, Genenta, CureVac, Grant for scientific project from Bayer. P.H.: Consultancy for Bayer, BMS, and Novocure; Honorarium from Novocure S.H.J.: K08 award (K08 NS110919-01—NIH). M.v.d.B.: Honoraria for consultancy from Anheart Therapeutics, Boehringer Ingelheim, Fore Biotherapeutics, Genenta, Incyte, Mundipharm, Chimerix, Roche, and Servier; Support for travel to meetings by Servier J.J.M.: Consultancy for Servier. P.Y.W.: Research Support from Astra Zeneca, Black Diamond, Bristol Meyers Squibb, Chimerix, Eli Lily, Erasca, Global Coalition For Adaptive Research, Kazia, MediciNova, Merck, Novartis, Quadriga, Servier, VBI Vaccines; Advisory Board/Consultant for Anheart, Astra Zeneca, Black Diamond, Celularity, Day One Bio, Genenta, Glaxo Smith Kline, Insightec, Kintara, Merck, Mundipharma, Novartis, Novocure, Sapience, Servier, Symbio, Tango, Telix. E.B.: Novartis, Alexion, Gilead, Servier and Fore US Bio.

References

1. Close AG, Dreyzin A, Miller KD, Seynnaeve BKN, Rapkin LB.. Adolescent and young adult oncology-past, present, and future. CA Cancer J Clin. 2019;69(6):485–496. - PubMed
1. Coccia PF, Pappo AS, Beaupin L, et al.Adolescent and young adult oncology, version 2.2018, NCCN clinical practice guidelines in oncology. J Nat Comp Cancer Netw. 2018;16(1):66–97. - PubMed
1. Freyer DR, Seibel NL.. The clinical trials gap for adolescents and young adults with cancer: Recent progress and conceptual framework for continued research. Curr Pediatr Rep. 2015;3(2):137–145. - PMC - PubMed
1. Ostrom QT, Price M, Neff C, et al.CBTRUS statistical report: Primary brain and other central nervous system tumors diagnosed in the United States in 2016-2020. Neuro-Oncology. 2023;25(suppl_412):iv1–iv99. - PMC - PubMed
1. Price M, Ryan K, Shoaf ML, et al.Childhood, adolescent, and adult primary brain and central nervous system tumor statistics for practicing healthcare providers in neuro-oncology, CBTRUS 2015-2019. Neurooncol. Pract.. 2024;11(1):5–25. - PMC - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

12124/CRUK_/Cancer Research UK/United Kingdom

LinkOut - more resources

Full Text Sources
- Ovid Technologies, Inc.
- Silverchair Information Systems

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Central nervous system tumors in adolescents and young adults: A Society for Neuro-Oncology Consensus Review on diagnosis, management, and future directions

Affiliations

Central nervous system tumors in adolescents and young adults: A Society for Neuro-Oncology Consensus Review on diagnosis, management, and future directions

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources