학술논문
Management of patients with rare adult solid cancers: objectives and evaluation of European reference networks (ERN) EURACAN.
Document Type
Academic Journal
Author
Blay JY; Department of Medical Oncology, Centre Leon Berard & Centre de Recherche en Cancérologie de Lyon (CRCL) & Université Claude Bernard Lyon 1, Lyon, France.; Casali P; Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy.; Ray-Coquard I; Department of Medical Oncology, Centre Leon Berard & Centre de Recherche en Cancérologie de Lyon (CRCL) & Université Claude Bernard Lyon 1, Lyon, France.; Seckl MJ; Department of Medical Oncology, Imperial College Hospitals National Health Service (NHS) Trust (ICHNT), London, United Kingdom.; Gietema J; Department of Medical Oncology, University Medical Centre Groningen, Groningen, the Netherlands.; University of Groningen Groningen, the Netherlands.; de Herder WW; Department of Internal Medicine, Sector of Endocrinology, Erasmus MC and Erasmus MC Cancer Institute, Rotterdam, the Netherlands.; Caplin M; Royal Free London NHS Foundation Trust, London, United Kingdom.; Klümpen HJ; Department of Medical Oncology, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.; Glehen O; Department of Surgical Oncology, Centre Hospitalier Lyon Sud, Equipe CICLY & Université Claude Bernard Lyon 1, Lyon, France.; Wyrwicz L; M Sklodowska Curie Memorial Cancer Centre, Warsaw, Poland.; Peeters R; Department of Internal Medicine, Erasmus MC, Rotterdam, the Netherlands.; Licitra L; Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy.; Girard N; Department of Medical Oncology, Institut Curie, Paris, France.; Piperno-Neumann S; Department of Medical Oncology, Institut Curie, Paris, France.; Kapiteijn E; Department of Medical Oncology, Leiden University Medical Centre, Leiden, the Netherlands.; Idbaih A; Sorbonne Université, Inserm, CNRS, UMR S 1127, Institut du Cerveau, ICM, AP-HP, Hôpitaux Universitaires La Pitié Salpêtrière - Charles Foix, Service de Neurologie 2-Mazarin, Paris, France.; Franceschi E; Azienda USL / IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy.; Trama A; Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy.; Frezza AM; Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy.; Hohenberger P; Div. of Surgical Oncology and Thoracic Surgery, Mannheim University Medical Centre, University of Heidelberg, Mannheim, Germany.; Hindi N; Fundación Jiménez Díaz University Hospital, Madrid, Spain.; Spanish Group for Research on Sarcoma (GEIS), Spain.; Martin-Broto J; Fundación Jiménez Díaz University Hospital, Madrid, Spain.; Spanish Group for Research on Sarcoma (GEIS), Spain.; Schell J; EURACAN Unit Centre Léon Bérard, Lyon, France.; Rogasik M; EURACAN Unit Centre Léon Bérard, Lyon, France.; Lejeune S; European Organisation for Research and Treatment of Cancer (EORTC), Brussels, Belgium.; Oliver K; The International Brain Tumour Alliance (IBTA), Tadworth, United Kingdom.; de Lorenzo F; European Cancer Patient Coalition (ECPC), Belgium.; Weinman A; European Patient Organisation for Rare Diseases (EURORDIS-Rare Diseases Europe), Brussels, Belgium.
Source
Publisher: [Oxford] Country of Publication: England NLM ID: 101777707 Publication Model: eCollection Cited Medium: Internet ISSN: 2666-7762 (Electronic) Linking ISSN: 26667762 NLM ISO Abbreviation: Lancet Reg Health Eur Subsets: PubMed not MEDLINE
Subject
Language
English
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.
Competing Interests: 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.
(© 2024 The Author(s).)
Competing Interests: 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.
(© 2024 The Author(s).)