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

Marta Penas-Prado; Brett J. Theeler; Brittany Cordeiro; Ira Dunkel; Peter Hau; Anita Mahajan; Giles 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-Prado; Terri 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; Alvina Acquaye; Terri S. Armstrong; John A. Butman; Javier Gonzalez; Heather Leeper; Nazanin Majd; Kathy Oliver; Christina Tsien; Patrick Wen

doi:10.1093/noajnl/vdaa097

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

Marta Penas-Prado, Brett J. Theeler, Brittany Cordeiro, Ira Dunkel, Peter Hau, Anita Mahajan, Giles 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, Alvina Acquaye, Terri S. Armstrong, John A. Butman, Javier Gonzalez, Heather Leeper, Nazanin Majd, Kathy Oliver, Christina Tsien, Patrick Wen

Research output: Contribution to journal › Article › peer-review

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 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 language	American English
Journal	Neuro-Oncology Advances
Volume	2
Issue number	1
DOIs	https://doi.org/10.1093/noajnl/vdaa097
State	Published - Jan 2020

Keywords

NCI-CONNECT
adult medulloblastoma
clinical trials
rare CNS tumors
workshop

Access to Document

10.1093/noajnl/vdaa097

Cite this

Penas-Prado, M., Theeler, B. J., Cordeiro, B., Dunkel, I., Hau, P., Mahajan, A., Robinson, G., Willmarth, N., Aboud, O., Aldape, K., Butman, J. A., Gajjar, A., Kelly, W., Rao, G., Raygada, M., Siegel, C., Romo, C. G., Armstrong, T. S., Gilbert, M. R., ... Wen, P. (2020). Proceedings of the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) Adult Medulloblastoma Workshop. Neuro-Oncology Advances, 2(1). https://doi.org/10.1093/noajnl/vdaa097

@article{0c976ebea8044f6596baf495ab4248ed,

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

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 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.",

keywords = "NCI-CONNECT, adult medulloblastoma, clinical trials, rare CNS tumors, workshop",

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

year = "2020",

month = jan,

doi = "10.1093/noajnl/vdaa097",

language = "American English",

volume = "2",

journal = "Neuro-Oncology Advances",

issn = "2632-2498",

publisher = "Oxford University Press",

number = "1",

}

Penas-Prado, M, Theeler, BJ, Cordeiro, B, Dunkel, I, Hau, P, Mahajan, A, Robinson, G, Willmarth, N, Aboud, O, Aldape, K, Butman, JA, Gajjar, A, Kelly, W, Rao, G, Raygada, M, Siegel, C, Romo, CG, Armstrong, TS, Gilbert, MR, Penas-Prado, M, Armstrong, TS, Gilbert, MR, Camphausen, K, Cordeiro, B, Dunkel, I, Gajjar, A, Galanis, E, Hau, P, Mahajan, A, Penas-Prado, M, Romo, CG, Wall, K, Abdullaev, Z, Celiku, O, Chapman, L, Gilbert, MR, Forsyth, P, Jung, J, Leach, D, Nair, NU, Kelly, W, Rao, G, Raygada, M, Robinson, G, Schischlik, F, Shih, H, Siegel, C, Theeler, BJ, Willmarth, N, Wu, J, Acquaye, A, Armstrong, TS, Butman, JA, Gonzalez, J, Leeper, H, Majd, N, Oliver, K, Tsien, C & Wen, P 2020, 'Proceedings of the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) Adult Medulloblastoma Workshop', Neuro-Oncology Advances, vol. 2, no. 1. https://doi.org/10.1093/noajnl/vdaa097

TY - JOUR

T1 - Proceedings of the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) Adult Medulloblastoma Workshop

AU - Penas-Prado, Marta

AU - Theeler, Brett J.

AU - Cordeiro, Brittany

AU - Dunkel, Ira

AU - Hau, Peter

AU - Mahajan, Anita

AU - Robinson, Giles

AU - Willmarth, Nicole

AU - Aboud, Orwa

AU - Aldape, Kenneth

AU - Butman, John A.

AU - Gajjar, Amar

AU - Kelly, William

AU - Rao, Ganesh

AU - Raygada, Margarita

AU - Siegel, Christine

AU - Romo, Carlos G.

AU - Armstrong, Terri S.

AU - Gilbert, Mark R.

AU - Penas-Prado, Marta

AU - Armstrong, Terri S.

AU - Gilbert, Mark R.

AU - Camphausen, Kevin

AU - Cordeiro, Brittany

AU - Dunkel, Ira

AU - Gajjar, Amar

AU - Galanis, Eva

AU - Hau, Peter

AU - Mahajan, Anita

AU - Penas-Prado, Marta

AU - Romo, Carlos G.

AU - Wall, Kathleen

AU - Abdullaev, Zied

AU - Celiku, Orieta

AU - Chapman, Lesley

AU - Gilbert, Mark R.

AU - Forsyth, Peter

AU - Jung, Jinkyu

AU - Leach, Danielle

AU - Nair, Nishanth Ulhas

AU - Kelly, William

AU - Rao, Ganesh

AU - Raygada, Margarita

AU - Robinson, Giles

AU - Schischlik, Fiorella

AU - Shih, Helen

AU - Siegel, Christine

AU - Theeler, Brett J.

AU - Willmarth, Nicole

AU - Wu, Jing

AU - Acquaye, Alvina

AU - Armstrong, Terri S.

AU - Butman, John A.

AU - Gonzalez, Javier

AU - Leeper, Heather

AU - Majd, Nazanin

AU - Oliver, Kathy

AU - Tsien, Christina

AU - Wen, Patrick

PY - 2020/1

Y1 - 2020/1

N2 - 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.

AB - 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.

KW - NCI-CONNECT

KW - adult medulloblastoma

KW - clinical trials

KW - rare CNS tumors

KW - workshop

UR - https://www.mendeley.com/catalogue/1568d0ba-20ba-3d6c-b4b6-ac3a05c5f8f7/

U2 - 10.1093/noajnl/vdaa097

DO - 10.1093/noajnl/vdaa097

M3 - Article

SN - 2632-2498

VL - 2

JO - Neuro-Oncology Advances

JF - Neuro-Oncology Advances

IS - 1

ER -