Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2024 Feb 16:39:100861.
doi: 10.1016/j.lanepe.2024.100861. eCollection 2024 Apr.

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

Jean-Yves Blay  1 , Paolo Casali  2 , Isabelle Ray-Coquard  1 , Michael J Seckl  3 , Jourik Gietema  4   5 , Wouter W de Herder  6 , Martyn Caplin  7 , Heinz-Josef Klümpen  8 , Olivier Glehen  9 , Lucjan Wyrwicz  10 , Robin Peeters  11 , Lisa Licitra  2 , Nicolas Girard  12 , Sophie Piperno-Neumann  12 , Ellen Kapiteijn  13 , Ahmed Idbaih  14 , Enrico Franceschi  15 , Annalisa Trama  2 , Anna-Maria Frezza  2 , Peter Hohenberger  16 , Nadia Hindi  17   18 , Javier Martin-Broto  17   18 , Johanna Schell  19 , Muriel Rogasik  19 , Stephane Lejeune  20 , Kathy Oliver  21 , Francesco de Lorenzo  22 , Ariane Weinman  23
Affiliations
Review

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

Jean-Yves Blay et al. Lancet Reg Health Eur. .

Abstract

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.

Keywords: Clinical practice guidelines; European reference networks; Rare cancers; Rare diseases; Reference centres; Relapse; Surgery; Survival.

PubMed Disclaimer

Conflict of interest statement

WwdH Consulting fees Novartis, Ipsen, Camurus, ITM Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events Novartis, Ipsen, Camurus, ITM (personal). AMF: Grants or contracts from any entity Advenchen Laboratories, Amgen DompÈ, AROG Pharmaceuticals, Bayer, Blueprint Medicines, Daiichi Sankyo, Deciphera, Eisai, Eli Lilly, Epizyme Inc, GlaxoSmithKline, Karyopharm Pharmaceuticals, Novartis, Pfizer, PharmaMar, SpringWorks. Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid EURACAN Coordination team G1 ISG Coordination of the WG dedicated to education (Institution). AI: Grants or contracts from any entity: Carthera Transgene NutrithÈragËne Sanofi Consulting fees: Novocure Leo Pharma Novartis Boehringer Ingelheim Polytone Laser INC. Support for attending meetings and/or travel Carthera, Enterome (To my institution, unrelated to the submitted work)/DSMB: NCT02331498 (unpaid). HJK: Participation on a Data Safety Monitoring Board or Advisory Board Janssen, Astra Zeneca, MSD (Advisory board, payments to my institution). JM-B Grants or contracts from any entity (PharmaMar Novartis Eisai IMMIX Biopharma Boehringer Ing. PTC Bio (Preclinical grant, to the institution); Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events PharmaMar Invited speaker Eli-Lilly Invited speaker Bayer Invited speaker Eisai Invited speaker Roche Invited speaker Daichii Invited speaker; IDMC: Tracon –(personal). LL: Grants or contracts: Adlai Nortye, Astrazeneca, BMS, DEbiopharm Eisai Eli Lilly, Exeliixis, Hoffman la Roche Isa therapeutics, Kura oncology, Merck Serono, MSD, MSD, Nektar, Novartis, Regeneron, Roche, Sanofi, Syneos, Sun Pharma, Incyte Bioscienc ee international, Gilead Science, Genmab, Merck KGa (to the institution); Consulting fees: MSD IT, Merck Serono, Spa Healthcare professional, Merck Healthcare Kga, GSK, Hoffman la Roche, ALX oncology, EMD Serono Research and Development Inst. , Boehringer Ingelheim Int. Payment or honoraria for lectures: Merck Serono Spa, Merck Healthcare Kga, Neutron therapeutics Inc, Merck& Co IOnc., Astrazeneca, MSD IT, EMDSerono Research & Development Institute Inc, Mirati THerapeutics inc, F Hoffmann la Roche Ltd, Novartis Pharma Spa, Janssen Research and Development LLC, SEagen International GmbH, Eisai Europe Limited, Genmab US Inc, AstraZeneca uK Ltd, Abbvie Srl (Personal). MC: Consulting fees AAA-NOVARTIS To me IPSEN Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events AAA-NOVARTIS IPSEN INCA (personal). MJS: Consulting fees:Gamida (personal). PGC: Grants or contracts: Advenchen, Amgen, Dompé, AROG Pharma, Bayer, Blueprint Medicines, Boehringer ingelheim, Diichi Sankyo, Deciphera, Eisai, Eli Lilly, Epizyme inc, Foghorn Ther. Inc, Glaxo, Hutchinson Mredipharma Ltd, Inhibrx Inc, Karyopharm pharmaceuticals, PTC ther, Novartis, Pfize, Pharmamar, Rain Oncology, Springworks (to institution). JYB Grants or contracts: EURACAN grant French NCI (INCA) NETSARC + grant, INTERSARC + grant, LYRICAN + grant; DEpGYN RHU; Fondation ARC:ACSE grant (to the institution); Ligue Nationale contre le Cancer ACSE Grant; Comité de l’Ain de la Ligue contre le Cancer Grant (all for the institution). The other authors report no conflict of interest related to this work.

Figures

Fig. 1
Fig. 1
Cancer groups and subgroups covered by EURACAN.
Fig. 2
Fig. 2
Graphical abstract of EURACAN activities.
Fig. 3
Fig. 3
EURACAN coverage as of February 2023.
See this image and copyright information in PMC

References

    1. Gatta G., van der Zwan J.M., Casali P.G., et al. RARECARE working group Rare cancers are not so rare: the rare cancer burden in Europe. Eur J Cancer. 2011;47:2493–2511. - PubMed
    1. Gatta G., Capocaccia R., Botta L., et al. RARECAREnet working group. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet-a population-based study. Lancet Oncol. 2017;18:1022–1039. - PubMed
    1. Blay J.Y., Casali P., Bouvier C., et al. EURACAN Network European Reference Network for rare adult solid cancers, statement and integration to health care systems of member states: a position paper of the ERN EURACAN. ESMO Open. 2021;6(4) doi: 10.1016/j.esmoop.2021.100174. Epub 2021 Jun 15. - DOI - PMC - PubMed
    1. Blay J.Y., Coindre J.M., Ducimetiere F., Ray-Coquard I. The value of research collaborations and consortia in rare cancers. Lancet Oncol. 2016;17:e62–e69. - PubMed
    1. Tumiene B., Graessner H., Mathijssen I.M., et al. European Reference Networks: challenges and opportunities. J Community Genet. 2021;12(2):217–229. doi: 10.1007/s12687-021-00521-8. Epub 2021 Mar 17. - DOI - PMC - PubMed

LinkOut - more resources