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Publications

Journal Article Review Ahead of print

PubMed: 42634880 DOI: 10.1080/14737140.2026.2723471

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

Expert Rev Anticancer Ther

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

Affiliations

  • Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy.
  • Associazione Tumori Toracici Rari APS ETS, Milan, Italy.
  • Humanitas Gavazzeni, Bergamo, Italy.
  • Fondazione IRCCS Ca Grande Ospedale Maggiore Policlinico, Milan, Italy.
  • Medical Oncology Department, Università Politecnica delle Marche, Ancona, Italy.
  • IRCCS Humanitas Research Hospital, Milan, Italy.
  • Thoracic Surgery and Lung Transplantation Unit; Fondazione IRCCS Ca Grande Ospedale Maggiore Policlinico, University of Milan, Milan, Italy.
  • Rare Cancers Reference Center, Campania Region, Azienda Ospedaliera Universitaria Federico II, Napoli, Italy.
  • Università di Pisa, Pisa, Italy.
  • University of Padua, Istituto Oncologico Veneto IRCCS, Padova, Italy.
  • Azienda Ospedaliera Universitaria di Padova, Padova, Italy.
  • IFO-Istituto Nazionale Tumori Regina Elena, Roma, Italy.
  • Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino; Ospedale Molinette, Torino, Italy.
  • The University of Chicago, Chicago, IL, USA.
  • Thoracic Surgery and Lung Transplantation Unit, Università di Padova, Padova, Italy.
  • Fondazione IRCCS Policlinico San Matteo, Pavia, Italy.
  • Humanitas University, Milan, Italy.

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.

MeSH

Neoplasms, Research