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

被引：11

作者：

Blay, Jean-Yves ^{[1
,2
]}

Casali, Paolo ^{[3
,4
]}

Ray-Coquard, Isabelle ^{[1
,2
]}

Seckl, Michael J. ^{[5
]}

Gietema, Jourik ^{[6
,26
]}

de Herder, Wouter W. ^{[7
,8
]}

Caplin, Martyn ^{[9
]}

Klumpen, Heinz-Josef ^{[10
]}

Glehen, Olivier ^{[11
]}

Wyrwicz, Lucjan ^{[12
]}

Peeters, Robin ^{[13
]}

Licitra, Lisa ^{[3
,4
]}

Girard, Nicolas ^{[14
]}

Piperno-Neumann, Sophie ^{[14
]}

Kapiteijn, Ellen ^{[15
]}

Idbaih, Ahmed ^{[16
]}

Franceschi, Enrico ^{[17
]}

Trama, Annalisa ^{[3
,4
]}

Frezza, Anna-Maria ^{[3
,4
]}

Hohenberger, Peter ^{[18
]}

Hindi, Nadia ^{[19
,20
]}

Martin-Broto, Javier ^{[19
,20
]}

Schell, Johanna ^{[21
]}

Rogasik, Muriel ^{[21
]}

Lejeune, Stephane ^{[22
]}

Oliver, Kathy ^{[23
]}

de Lorenzo, Francesco ^{[24
]}

Weinmanv, Ariane ^{[25
]}

机构：

[1] Univ Claude Bernard Lyon 1, Dept Med Oncol, Ctr Leon Berard, Lyon, France

[2] Ctr Rech Cancerol Lyon CRCL, Lyon, France

[3] Fdn IRCCS Ist Nazl Tumori, Dept Med Oncol, Milan, Italy

[4] Univ Milan, Milan, Italy

[5] Imperial Coll Hosp Natl Hlth Serv NHS Trust ICHNT, Dept Med Oncol, London, England

[6] Univ Med Ctr Groningen, Dept Med Oncol, Groningen, Netherlands

[7] Erasmus MC, Sect Endocrinol, Dept Internal Med, Rotterdam, Netherlands

[8] Erasmus MC Canc Inst, Rotterdam, Netherlands

[9] Royal Free London NHS Fdn Trust, London, England

[10] Univ Amsterdam, Dept Med Oncol, Amsterdam UMC, Amsterdam, Netherlands

[11] Ctr Hosp Lyon Sud, Equipe CICLY, Dept Surg Oncol, Lyon, France

[12] M Sklodowska Curie Mem Canc Ctr, Warsaw, Poland

[13] Erasmus MC, Dept Internal Med, Rotterdam, Netherlands

[14] Inst Curie, Dept Med Oncol, Paris, France

[15] Leiden Univ, Dept Med Oncol, Med Ctr, Leiden, Netherlands

[16] Sorbonne Univ, Inserm, Inst Cerveau, CNRS,UMR S 1127,ICM,Hop Univ Pitie Salpetriere, Paris, France

[17] IRCCS Ist Sci Neurol Bologna, Azienda USL, Bologna, Italy

[18] Heidelberg Univ, Mannheim Univ, Med Ctr, Div Surg Oncol & Thorac Surg, Mannheim, Germany

[19] Fdn Jimenez Diaz Univ Hosp, Madrid, Spain

[20] Spanish Grp Res Sarcoma GEIS, Madrid, Spain

[21] EURACAN Unit Ctr Leon Berard, Lyon, France

[22] European Org Res & Treatment Canc EORTC, Brussels, Belgium

[23] Int Brain Tumour Alliance IBTA, Tadworth, England

[24] European Canc Patient Coalit ECPC, Brussels, Belgium

[25] European Patient Org Rare Dis EURORDIS Rare Dis, Brussels, Belgium

[26] Univ Groningen, Groningen, Netherlands

来源：

LANCET REGIONAL HEALTH-EUROPE | 2024年 / 39卷

关键词：

Rare cancers; Rare diseases; Clinical practice guidelines; Surgery; Relapse; Survival; Reference centres; European reference networks; CLINICAL-PRACTICE GUIDELINE; SARCOMA PATIENTS; DIAGNOSIS; TUMORS; SURVIVAL; BURDEN;

D O I：

10.1016/j.lanepe.2024.100861

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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. Copyright (c) 2024 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY -NC -ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

引用

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