From fragmentation to focus: building collaborative networks for rare cancer research – the Italian TYME network as a model for care and innovation?

INTRODUCTION: Rare cancers, individually uncommon but collectively significant, pose major challenges due to their heterogeneity, low incidence, and fragmented expertise. This review addresses the complexities of managing and researching rare cancers, highlighting the necessity for collaborative networks. AREAS COVERED: A systematic literature search was conducted using PubMed to identify peer-reviewed articles from 2010 to 2025 focusing on rare cancers, collaborative clinical networks, European Reference Networks (ERNs), and thymic malignancies. The review examines key obstacles such as limited patient populations, uneven expertise distribution, funding challenges, and explores models of collaboration including ERNs and the Italian TYME network. These networks exemplify integrated efforts to improve clinical care, research efficiency, and patient involvement through coordinated governance, registries, and multidisciplinary approaches. EXPERT OPINION: Sustainable, transparent, and inclusive collaborative networks like TYME and ERNs are essential to overcoming rare cancer research barriers. They enable standardized care, robust data sharing, and enhanced clinical trials, ultimately improving outcomes. Continued investment, policy support, and expansion of interoperable digital infrastructures are critical to fully realize the transformative potential of these network models in rare cancer care.

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Publication Details

Journal
Expert Review of Anticancer Therapy
Published
2026-08-24
DOI
https://doi.org/10.1080/14737140.2026.2723471
Primary Topic
Genomics and Rare Diseases
Type
article
Field-Weighted Citation Impact
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article

From fragmentation to focus: building collaborative networks for rare cancer research – the Italian TYME network as a model for care and innovation?

Enrico Ruffini, Iacopo Petrini, Davide Franceschini, Mirella Marino et al.
Expert Review of Anticancer Therapy
Genomics and Rare Diseases
article

From fragmentation to focus: building collaborative networks for rare cancer research – the Italian TYME network as a model for care and innovation?

Enrico Ruffini, Iacopo Petrini, Davide Franceschini, Mirella Marino, Fiorella Calabrese, Monica Ganzinelli, Paolo Mendogni, Giovanni Maria Comacchio, Andrea Dell’Amore, Laura Abate-Daga, Giulia Pasello, Giulia Galli, Marina Garassino, Giovannella Palmieri, Paolo Andreas Zucali, Paris-Paraskevas Lyberis, Letizia Cecere Fabiana, Giuseppe Lo Russo, Tommaso Martino De Pas, Annalisa Trama, Rossana Berardi, Lorenzo Rosso
article en

Abstract

INTRODUCTION: Rare cancers, individually uncommon but collectively significant, pose major challenges due to their heterogeneity, low incidence, and fragmented expertise. This review addresses the complexities of managing and researching rare cancers, highlighting the necessity for collaborative networks. AREAS COVERED: A systematic literature search was conducted using PubMed to identify peer-reviewed articles from 2010 to 2025 focusing on rare cancers, collaborative clinical networks, European Reference Networks (ERNs), and thymic malignancies. The review examines key obstacles such as limited patient populations, uneven expertise distribution, funding challenges, and explores models of collaboration including ERNs and the Italian TYME network. These networks exemplify integrated efforts to improve clinical care, research efficiency, and patient involvement through coordinated governance, registries, and multidisciplinary approaches. EXPERT OPINION: Sustainable, transparent, and inclusive collaborative networks like TYME and ERNs are essential to overcoming rare cancer research barriers. They enable standardized care, robust data sharing, and enhanced clinical trials, ultimately improving outcomes. Continued investment, policy support, and expansion of interoperable digital infrastructures are critical to fully realize the transformative potential of these network models in rare cancer care.

Expert Review of Anticancer Therapy
University of Pisa (IT), Marche Polytechnic University (IT), Humanitas University (IT), University of Padua (IT), University of Milan (IT), Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico (IT), University of Chicago (US), Azienda Ospedaliera Citta' della Salute e della Scienza di Torino (IT), Istituto Oncologico Veneto (IT), Federico II University Hospital (IT), Humanitas Gavazzeni (IT), Tumori Foundation (US), Azienda Ospedale - Università Padova (IT), Policlinico San Matteo Fondazione (IT), Istituti di Ricovero e Cura a Carattere Scientifico (IT), Fondazione IRCCS Istituto Nazionale dei Tumori (IT), IRCCS Humanitas Research Hospital (IT)
Industry, innovation and infrastructure
Openalex Percentile: Top 10%
Genomics and Rare Diseases
DOISourceOpenAlex
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