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Review
. 2020 Aug 17;2(1):vdaa097.
doi: 10.1093/noajnl/vdaa097. eCollection 2020 Jan-Dec.

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

Marta Penas-Prado  1 , Brett J Theeler  1   2 , Brittany Cordeiro  1 , Ira J Dunkel  3 , Peter Hau  4 , Anita Mahajan  5 , Giles W Robinson  6 , Nicole Willmarth  7 , Orwa Aboud  1   8 , Kenneth Aldape  9 , John A Butman  10 , Amar Gajjar  6 , William Kelly  1 , Ganesh Rao  11 , Margarita Raygada  1 , Christine Siegel  1 , Carlos G Romo  1   8 , Terri S Armstrong  1 , Mark R Gilbert  1 ; NCI-CONNECT Adult Medulloblastoma Workshop
Collaborators, Affiliations
Review

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

Marta Penas-Prado et al. Neurooncol Adv. .

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.

Keywords: NCI-CONNECT; adult medulloblastoma; clinical trials; rare CNS tumors; workshop.

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References

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