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

Marta Penas-Prado, Brett J. Theeler, Brittany Cordeiro, Ira J. Dunkel, Peter Hau, Anita Mahajan, Giles W. Robinson, Nicole Willmarth, Orwa Aboud, Kenneth Aldape, John A. Butman, Amar Gajjar, William Kelly, Ganesh Rao, Margarita Raygada, Christine Siegel, Carlos G. Romo, Terri S. Armstrong, Mark R. Gilbert, Marta Penas-PradoTerri S. Armstrong, Mark R. Gilbert, Kevin Camphausen, Brittany Cordeiro, Ira Dunkel, Amar Gajjar, Eva Galanis, Peter Hau, Anita Mahajan, Marta Penas-Prado, Carlos G. Romo, Kathleen Wall, Zied Abdullaev, Orieta Celiku, Lesley Chapman, Mark R. Gilbert, Peter Forsyth, Jinkyu Jung, Danielle Leach, Nishanth Ulhas Nair, William Kelly, Ganesh Rao, Margarita Raygada, Giles Robinson, Fiorella Schischlik, Helen Shih, Christine Siegel, Brett J. Theeler, Nicole Willmarth, Jing Wu, Orwa Aboud, Alvina Acquaye, Terri S. Armstrong, John A. Butman, Javier Gonzalez, Heather Leeper, Nazanin Majd, Kathy Oliver, Christina Tsien, Patrick Wen

Research output: Contribution to journalArticlepeer-review


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 Moonshotto 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.

Original languageEnglish (US)
Article numbervdaa097
JournalNeuro-Oncology Advances
Issue number1
StatePublished - Jan 1 2020


  • adult medulloblastoma
  • clinical trials
  • rare CNS tumors
  • workshop

ASJC Scopus subject areas

  • Clinical Neurology
  • Oncology
  • Surgery


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