Proceedings of the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) Adult Medulloblastoma Workshop

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Abstract

Background

Medulloblastoma (MB) is a rare brain tumor occurring more frequently in children in whom research has been primarily focused. Treatment recommendations in adults are mainly based on retrospective data and pediatric experience; however, molecular features and treatment tolerance differ between the 2 age groups. In adults, prognostic tools are suboptimal, late recurrences are typical, and long-term sequelae remain understudied. Treatment has not adapted to molecular classification advances; thus, the survival rate of adult MB has not improved.

Methods

In 2017, the National Cancer Institute (NCI) received support from the Cancer Moonshot℠ to address the challenges and unmet needs of adults with rare central nervous system tumors through NCI-CONNECT, a program that creates partnerships among patients, health care professionals, researchers, and advocacy organizations. On November 25, 2019, NCI-CONNECT convened leading clinicians and scientists in a workshop to review advances in research, share scientific insights, and discuss clinical challenges in adult MB.

Results

Working groups identified unmet needs in clinical trial design, tissue acquisition and testing, tumor modeling, and measurement of clinical outcomes.

Conclusions

Participants identified opportunities for collaboration; discussed plans to create a working group of clinicians, researchers, and patient advocates; and developed specific action items to expedite progress in adult MB.

Related collections

Author and article information

Journal

Journal ID (nlm-ta): Neurooncol Adv

Journal ID (iso-abbrev): Neurooncol Adv

Journal ID (publisher-id): noa

Title: Neuro-oncology Advances

Publisher: Oxford University Press (US )

ISSN (Electronic): 2632-2498

Publication date Collection: Jan-Dec 2020

Publication date (Electronic): 17 August 2020

Publication date PMC-release: 17 August 2020

Volume: 2

Issue: 1

Electronic Location Identifier: vdaa097

Affiliations

[1 ] Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health (NIH) , Bethesda, Maryland, USA

[2 ] Department of Neurology, Walter Reed National Military Medical Center , Bethesda, Maryland, USA

[3 ] Pediatrics, Memorial Sloan Kettering Cancer Center , New York, New York, USA

[4 ] Wilhelm Sander NeuroOncology Unit and Department of Neurology, University Hospital Regensburg , Regensburg, Germany

[5 ] Radiation Oncology, Mayo Clinic , Rochester, Minnesota, USA

[6 ] Department of Oncology, St Jude Children’s Research Hospital , Memphis, Tennessee, USA

[7 ] American Brain Tumor Association , Chicago, Illinois, USA

[8 ] Brain Tumor Program, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins , Baltimore, Maryland, USA

[9 ] Laboratory of Pathology, Center for Cancer Research, National Cancer Institute , NIH, Bethesda, Maryland, USA

[10 ] Radiology and Imaging Sciences, NIH Clinical Center , Bethesda, Maryland, USA

[11 ] Department of Neurosurgery, The University of Texas MD Anderson Cancer Center , Houston, Texas, USA

[12 ] NIH/NCI/NOB

[13 ] ANP-BC, FAAN, FAANP, Outcomes Research

[14 ] NIH

[15 ] Memorial Sloan Kettering Cancer Center/PBTC

[16 ] St. Jude Children’s Research Hospital

[17 ] Mayo Clinic

[18 ] University of Regensburg

[19 ] H. Lee Moffitt Cancer Center & Research Institute

[20 ] National Brain Tumor Society (NBTS)

[21 ] MD Anderson Cancer Center

[22 ] Massachusetts General Hospital

[23 ] American Brain Tumor Association (ABTA)

[24 ] International Brain Tumour Alliance (IBTA)

[25 ] Johns Hopkins National Proton Therapy Center, Sibley Memorial Hospital

[26 ] Dana Farber Cancer Institute

Author notes

Corresponding Author: Marta Penas-Prado, MD, Neuro-Oncology Branch/National Cancer Institute, 9030 Old Georgetown Road, Building 82-213, Bethesda, MD 20892, USA ( marta.penas-prado@ 123456nih.gov ).

Author information

Terri S Armstrong http://orcid.org/0000-0002-2414-0492

Article

Accession ID: PMC7518566 Pmcid ID: PMC7518566 Pmc-uid ID: 7518566 Publisher ID: vdaa097

DOI: 10.1093/noajnl/vdaa097

PMC ID: 7518566

PubMed ID: 33005896

SO-VID: 89619916-aec9-448b-b319-af0e72ba50eb

License:

This Open Access article contains public sector information licensed under the Open Government Licence v2.0 ( http://www.nationalarchives.gov.uk/doc/open-government-licence/version/2/).

History

Date: 25 September 2020

Page count

Pages: 14

Funding

Funded by: National Institutes of Health, DOI 10.13039/100000002;

Funded by: National Cancer Institute, DOI 10.13039/100000054;

Award ID: P30 CA008748

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