{"doi":"10.1093/noajnl/vdaa097","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 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.","journal":"Neuro-Oncology Advances","year":2020,"id":86269,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":14,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9641,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2020-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":398851,"name":"Brett Theeler","orcid":null,"position":1,"is_corresponding":false},{"id":440904,"name":"Brittany Cordeiro","orcid":null,"position":2,"is_corresponding":false},{"id":236601,"name":"Ira J. Dunkel","orcid":"0000-0001-8091-6067","position":3,"is_corresponding":false},{"id":7217,"name":"Peter Hau","orcid":"0000-0003-3894-5053","position":4,"is_corresponding":false},{"id":439996,"name":"Anita Mahajan","orcid":"0000-0001-7609-4451","position":5,"is_corresponding":false},{"id":5549,"name":"Giles Robinson","orcid":"0000-0001-7441-9486","position":6,"is_corresponding":false},{"id":225617,"name":"Nicole E. Willmarth","orcid":"0000-0002-6454-8396","position":7,"is_corresponding":false},{"id":422294,"name":"Orwa Aboud","orcid":"0000-0002-7916-1629","position":8,"is_corresponding":false},{"id":13200,"name":"Kenneth Aldape","orcid":"0000-0001-5119-7550","position":9,"is_corresponding":false},{"id":439997,"name":"John A. Butman","orcid":"0000-0002-1547-9195","position":10,"is_corresponding":false},{"id":5546,"name":"Amar Gajjar","orcid":"0000-0001-5019-0699","position":11,"is_corresponding":false},{"id":439998,"name":"William Kelly","orcid":"0000-0003-4491-3541","position":12,"is_corresponding":false},{"id":271512,"name":"Ganesh Rao","orcid":"0000-0003-3609-3491","position":13,"is_corresponding":false},{"id":439999,"name":"Margarita Raygada","orcid":"0009-0009-6590-7926","position":14,"is_corresponding":false},{"id":429512,"name":"Christine Siegel","orcid":null,"position":15,"is_corresponding":false},{"id":422296,"name":"Carlos G. Romo","orcid":"0000-0002-0260-7047","position":16,"is_corresponding":false},{"id":292546,"name":"Terri S. Armstrong","orcid":"0000-0002-2414-0492","position":17,"is_corresponding":false},{"id":109755,"name":"Mark R. Gilbert","orcid":"0000-0003-2556-9722","position":18,"is_corresponding":false},{"id":440905,"name":"NCI-CONNECT Adult Medulloblastoma Workshop","orcid":null,"position":19,"is_corresponding":false},{"id":254789,"name":"Kevin Camphausen","orcid":"0000-0002-0450-4877","position":23,"is_corresponding":false},{"id":440906,"name":"E. Galanis","orcid":null,"position":27,"is_corresponding":false},{"id":429511,"name":"Kathleen Wall","orcid":null,"position":32,"is_corresponding":false},{"id":240507,"name":"Zied Abdullaev","orcid":"0000-0001-6345-2088","position":33,"is_corresponding":false},{"id":364664,"name":"Orieta Celiku","orcid":"0000-0002-0500-1032","position":35,"is_corresponding":false},{"id":227315,"name":"Lesley M. Chapman","orcid":"0000-0001-7413-4392","position":36,"is_corresponding":false},{"id":225601,"name":"Peter Forsyth","orcid":"0000-0002-3756-8594","position":38,"is_corresponding":false},{"id":440000,"name":"Jinkyu Jung","orcid":"0000-0002-8359-6246","position":39,"is_corresponding":false},{"id":440907,"name":"Danielle Leach","orcid":null,"position":40,"is_corresponding":false},{"id":440001,"name":"Nishanth Ulhas Nair","orcid":"0000-0002-8832-0329","position":41,"is_corresponding":false},{"id":440002,"name":"Fiorella Schischlik","orcid":"0000-0003-4299-7657","position":46,"is_corresponding":false},{"id":259418,"name":"Helen A. Shih","orcid":"0000-0003-1550-9726","position":47,"is_corresponding":false},{"id":232028,"name":"Jing Wu","orcid":"0000-0002-1686-9646","position":51,"is_corresponding":false},{"id":428704,"name":"Alvina Acquaye","orcid":"0000-0002-9673-1312","position":53,"is_corresponding":false},{"id":397342,"name":"Javier Gonzalez","orcid":"0000-0002-8641-8373","position":56,"is_corresponding":false},{"id":440003,"name":"Heather Leeper","orcid":"0000-0003-2840-611X","position":57,"is_corresponding":false},{"id":401726,"name":"Nazanin Majd","orcid":"0000-0001-6451-544X","position":58,"is_corresponding":false},{"id":234768,"name":"Kathy Oliver","orcid":"0000-0002-8317-2881","position":59,"is_corresponding":false},{"id":439522,"name":"Christina Tsien","orcid":"0000-0002-5458-5732","position":60,"is_corresponding":false},{"id":25299,"name":"Patrick Y. Wen","orcid":"0000-0002-0774-7700","position":61,"is_corresponding":false},{"id":423237,"name":"Marta Peñas-Prado","orcid":null,"position":0,"is_corresponding":true}],"reference_count":77,"raw_metadata":null,"created_at":"2026-07-18T21:58:41.997408Z","pmid":"33005896","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}