Management of patients with rare adult solid cancers: objectives and evaluation of European reference networks (ERN) EURACAN

Jean Yves Blay*, Paolo Casali, Isabelle Ray-Coquard, Michael J. Seckl, Jourik Gietema, Wouter W. de Herder, Martyn Caplin, Heinz Josef Klümpen, Olivier Glehen, Lucjan Wyrwicz, Robin Peeters, Lisa Licitra, Nicolas Girard, Sophie Piperno-Neumann, Ellen Kapiteijn, Ahmed Idbaih, Enrico Franceschi, Annalisa Trama, Anna Maria Frezza, Peter HohenbergerNadia Hindi, Javier Martin-Broto, Johanna Schell, Muriel Rogasik, Stephane Lejeune, Kathy Oliver, Francesco de Lorenzo, Ariane Weinman

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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About 500,000 patients with rare adult solid cancers (RASC) are diagnosed yearly in Europe. Delays and unequal quality of management impact negatively their survival. Since 2017, European reference networks (ERN) aim to improve the quality of care of patients with rare disease. The steering committee of EURACAN, including physicians, researchers and patients review here the previous actions, present objectives of the ERN EURACAN dedicated to RASC. EURACAN promoted management in reference centres, and equal implementation of excellence and innovation in Europe and developed 22 clinical practice guidelines (CPGs). Additionally, fourteen information brochures translated in 24 EU languages were developed in collaboration with patient advocacy groups (ePAGs) and seventeen training session were organized. Nevertheless, connections to national networks in the 26 participating countries (106 centres), simplification of cross-border healthcare, international multidisciplinary tumour boards, registries and monitoring of the quality of care are still required. In this Health Policy, evaluation criteria of the performances of the network and of health care providers are proposed.

Original languageEnglish
Article number100861
Number of pages12
JournalThe Lancet Regional Health - Europe
Publication statusPublished - Apr-2024


  • Clinical practice guidelines
  • European reference networks
  • Rare cancers
  • Rare diseases
  • Reference centres
  • Relapse
  • Surgery
  • Survival


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