Rare Cancer Agenda 2030 E-Book

Rare Cancers Europe

• Herausgeber: Youcanprint
• Kategorie: Fachliteratur
• Sprache: Englisch
• Veröffentlichungsjahr: 2020

Beschreibung

RARE CANCER AGENDA 2030 Ten Recommendations from the EU Joint Action on Rare Cancers 1. Rare cancers are the rare diseases of oncology 2. Rare cancers should be monitored 3. Health systems should exploit networking 4. Medical education should exploit and serve healthcare networking 5. Research should be fostered by networking and should take into account an expected higher degree of uncertainty 6. Patient-physician shared clinical decision-making should be especially valued 7. Appropriate state-of-the-art instruments should be developed in rare cancer 8. Regulation on rare cancers should tolerate a higher degree of uncertainty 9. Policy strategies on rare cancers and sustainability of interventions should be based on networking 10. Rare cancer patients should be engaged

Leseprobe

This work is part of the project Joint Action on Rare Cancers “724161/JARC”, which has received funding from the European Union’s Health Programme (2014-2020)>The content of this work represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains

RARE CANCER AGENDA 2030

Ten Recommendations from the EU Joint Action on Rare Cancers

This work is part of the project Joint Action on Rare Cancers “724161/JARC”, which has received funding from the European Union’s Health Programme (2014-2020)

Title | Rare Cancer Agenda 2030 Author | JARC – Joint Action on Rare Cancers ISBN | 9788831642712 © All rights reserved by the Author Youcanprint Via Marco Biagi 6 - 73100 Lecce www.youcanprint.it [email protected]

Editors

Paolo G. Casali

(JARC Coordinator)

Fondazione IRCCS Istituto Nazionale Tumori; University of Milan – Milan, Italy

Annalisa Trama

Fondazione IRCCS Istituto Nazionale Tumori, Milan – Italy

Writing committee

Luisa Basset

Childhood Cancer International Europe, Spain

Harriet Blaauwgeers

Organisation of European Cancer Institutes; Netherlands Comprehensive Cancer Organisation (IKNL), Netherlands

Jean-Yves Blay

(ERN Coordinator, ERN EURACAN)

Centre Léon Bérard; Université Cl. Bernard Lyon 1 – Lyon, France

Josep M Borras

(WP leader, Rare cancer policy)

Catalan Cancer strategy; University of Barcelona – Barcelona, Spain

Laura Botta

Fondazione IRCCS Istituto Nazionale Tumori, Milan – Italy

Valentina Bottarelli

EURORDIS-Rare Diseases Europe

Ines B. Brecht

University Children's Hospital Tuebingen; German Society for Pediatric Oncology and Hematology (GPOH), Germany

Melanie Brunhofer

Childhood Cancer International Europe, Austria

Adela Cañete Nieto

Hospital Universitario y Politécnico La Fe. Valencia – Valencia, Spain

Riccardo Capocaccia

Fondazione IRCCS Istituto Nazionale Tumori, Milan – Italy

Anna Carta

Rare Cancers Europe

María Dolores Chirlaque López

Murcia Regional Health Council; IMIB – Murcia, Spain

Lucia da Pieve

Centro di Riferimento Oncologico di Aviano – Aviano, Italy

Henna Degerlund

Cancer Society of Finland – Helsinki, Finland

Francesco De Lorenzo

European Cancer Patient Coalition

Paolo de Paoli

Organisation of European Cancer Institutes; Centro di Riferimento Oncologico di Aviano – Aviano, Italy

Angelo P. Dei Tos

University of Padova - Padua, Italy

Pierre Fenaux

(ERN Coordinator, EuroBloodNet)

Hôpital St Louis/université Paris 7 – Paris, France

Alex Filicevas

European Cancer Patient Coalition

Anna Maria Frezza

Fondazione IRCCS Istituto Nazionale Tumori, Milan – Italy

Gemma Gatta

(WP leader, Epidemiology)

Fondazione IRCCS Istituto Nazionale Tumori, Milan – Italy

Maria Gazouli

(WP leader, Dissemination)

Medical School, National and Kapodistrian University of Athens – Athens, Greece

Lars Hjorth

Skane University Hospital, Sweden; Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare); European Society for Paediatric Oncology (SIOP Europe)

Peter Hohenberger

(WP leader, Clinical practice guidelines)

University of Heidelberg – Heidelberg; Mannheim University Medical Center – Mannheim, Germany

Nicoline Hoogerbrugge

(ERN Coordinator, ERN GENTURIS)

Radboud University Medical Center Nijmegen – Nijmegen, The Netherlands

Tobias Janowitz

Organisation of European Cancer Institutes; Cancer Research UK Centre, Cambridge, United Kingdom

Sakari Karjalainen

(WP leader, Evaluation)

Cancer Society of Finland – Helsinki, Finland

Pamela Kearns

University of Birmingham – Birmingham, United Kingdom; European Society for Paediatric Oncology (SIOP Europe)

Anita Kienesberger

Childhood Cancer International Europe, Austria

Olga Kozhaeva

European Society for Paediatric Oncology (SIOP Europe)

Annemiek Kwast

Organisation of European Cancer Institutes; Netherlands Comprehensive Cancer Organisation (IKNL), Netherlands

Ruth Ladenstein

(ERN Coordinator, ERN PaedCan)

Children's Cancer Research Institute – Wien, Austria; European Society for Paediatric Oncology (SIOP Europe)

Yann Le Cam

EURORDIS-Rare Diseases Europe

Lisa Licitra

Fondazione IRCCS Istituto Nazionale Tumori; University of Milan – Milan, Italy

Claudio Lombardo

Organisation of European Cancer Institutes

Maria Carmen Lopez-Briones Reverte

Murcia Regional Health Council; IMIB – Murcia, Spain

Isabelle Manneh

European Cancer Patient Coalition

Kleio Mavragani

Medical School, National and Kapodistrian University of Athens – Athens, Greece

Béla Melegh

(WP leader, Medical education)

University of Pécs, School of Medicine, Medical Center – Pécs, Hungary

Simon Oberst

(WP leader, Assuring Quality of care)

Organisation of European Cancer Institutes

Kathy Oliver

International Brain Tumour Alliance

Rafael Peris Bonet

University of Valencia – Valencia, Spain

Dafina Petrova

Andalusian Public Health School Granada (EASP); ibs.GRANADA; CIBERESP – Granada, Spain

Kalliopi Platoni

Medical School, National and Kapodistrian University of Athens – Athens, Greece

Joan Prades

Catalan Cancer strategy; University of Barcelona – Barcelona, Spain

Kathy Pritchard-Jones

University College London Great Ormond Street Institute of Child Health – London, United Kingdom

Maria José Sánchez-Pérez

Andalusian Public Health School Granada (EASP); ibs.GRANADA; CIBERESP; UGR – Granada, Spain

Mario Šekerija

Croatian Institute of Public Health – Zagreb, Croatia

Riccardo Spizzo

Organisation of European Cancer Institutes; Centro di Riferimento Oncologico di Aviano – Aviano, Italy

Kiangenda Trésor Sungu-Winkler

University of Mannheim – Mannheim, Germany

Nancy Van Damme

Belgian Cancer Registry – Bruxelles, Belgium

Marc Van den Bulcke

(WP leader, Innovation and access to innovation)

Cancer centre, Sciensano – Bruxelles, Belgium

Jan Maarten van der Zwan

Organisation of European Cancer Institutes; Netherlands Comprehensive Cancer Organisation (IKNL), Netherlands

Liesbet Van Eycken

Belgian Cancer Registry – Bruxelles, Belgium

Gilles Vassal

(WP leader, Childhood cancer)

Gustave Roussy – Villejuif, France; European Society for Paediatric Oncology (SIOP Europe)

Otto Visser

Netherlands Comprehensive Cancer Organisation (IKNL), Netherlands

Malvika Vyas

Rare Cancers Europe

Ariane Weinman

EURORDIS-Rare Diseases Europe

Introduction

Rare cancers are rare occurrences of a common disease. They affect one in five new patients with cancer.

This enshrines many of the distinct features of rare cancers among rare diseases, with which they share most of the issues that are typical of rarity. This booklet puts forward the main recommendations of the

Joint Action on Rare Cancers

, which in 2016, in parallel to a

Joint Action on Rare Diseases

, the European Commission decided to launch to help tackle such issues. In 2017, the European Commission set up the

European Reference Networks

on rare diseases, including rare cancers.

We hope that these recommendations can be instrumental to the policy agenda on rare cancers in the European Union for the years to come. We do need an agenda on rare cancers, to minimize the risk that rare cancer patients may be discriminated against simply because of the numbers of the disease they suffer from. At least, we need to relieve these patients from what would further be added thereby to all obvious burdens of a serious disease, and could be avoided. How could it be avoided? We would say that, in essence, healthcare networking and clinical and research methodology are the two areas that could make the difference. These two areas give rise to much of the “rare cancer agenda 2030” of this booklet, which, in the end, was drafted as of 2019 by many disease-based communities. All the more in rare conditions, disease-based communities are vital to get what a disease is and what it needs across to policymakers and health administrators, to industry, to the public. These communities are made up of patients, obviously first, and all health professionals (in the broadest sense) who decide to dedicate their lives to a disease, or a group of diseases. We simply ask that their voice, their knowledge, is listened to.

Much of what this Joint Action has done was built on the work of the EU-funded project

Surveillance of Rare Cancers in Europe

(RARECARE), the multi-stakeholder effort

Rare Cancers Europe

, founded in 2008 and involving patients, healthcare professionals, industry and others, the

European Society for Paediatric Oncology

(SIOP Europe) for paediatric cancers, and many others. Once the

Joint Action on Rare Cancers

comes to an end, the whole European rare cancer community will take over the task of pursuing the most specific recommendations of this booklet. Obviously in the European Union, and importantly within its single Member States, but then throughout the whole of Europe and globally. Indeed, we might recall that

Rare Cancers Europe

is now launching projects with

Rare Cancers Asia

, and so forth.

This booklet is structured around the ten gross recommendations of the

Joint Action on Rare Cancers

. They correspond to ten chapters, each paragraph of which is a distinct item: often, it is a single, specific recommendation. We hope that all this may be useful. It was the output of the work of so many communities, gathering under a Joint Action of the European Union, in the spirit of service to future rare cancer patients.

Paolo G. Casali Annalisa Trama

RARE CANCER AGENDA 2030

Ten Recommendations from the EU Joint Action on Rare Cancers

1.

Rare cancers are the rare diseases of oncology

...needing specific approaches by the cancer community and national health systems

2.

Rare cancers should be monitored

...epidemiologically and clinically, properly valuing population-based cancer registry data and real-world clinical data, encouraging all efforts to make all available data bases interoperable

3.

Health systems should exploit networking

...around multidisciplinary centres of reference, to improve quality of care in rare cancers by rationalizing patient access to available best expertise and lowering/rationalizing health migration

4.

Medical education should exploit and serve healthcare networking

...by proper integration of the university system and all educational players, being instrumental to dedicated career mechanisms and opportunities

5.

Research should be fostered by networking and should take into account an expected higher degree of uncertainty

...exploiting clinically annotated biobanking, clinical registering, patient referral to ongoing clinical studies, as well as innovative methodologies for clinical research

6.

Patient-physician shared clinical decision-making should be especially valued

...being crucial to the appropriate approach to the high degree of uncertainty posed by rare cancers

7.

Appropriate state-of-the-art instruments should be developed in rare cancer

...fit to serve clinical decision-making in conditions of uncertainty

8.

Regulation on rare cancers should tolerate a higher degree of uncertainty

...being disease-adapted and providing developers of innovation with certainty of rules across the EU

9.

Policy strategies on rare cancers and sustainability of interventions should be based on networking

...exploiting national cancer plans, listening to networks and disease-based communities, integrating the EU and the national levels, funding networking

10.

Rare cancer patients should be engaged

...in all crucial areas, such as disease awareness and education, healthcare organization, state-of-the-art instruments, regulatory mechanisms, clinical and translational research

Each Chapter of this booklet builds upon one of the ten gross recommendations of the Joint Action on Rare Cancers (its Rare Cancer Agenda 2030). Chapters are divided into Sections, with numbered Paragraphs, each corresponding to conceptually distinct items, which often serve as single, specific recommendations. These more detailed recommendations reflect the outputs of the Joint Action’s Work Packages. However, their associated deliverables have obviously been much more extensive. Sometimes, they are mentioned throughout the text, and the reader is then referred to the Joint Action’s website.

Paediatric cancers are rare cancers. However, they often require specific approaches, in line with their distinct age-related biological, clinical and organizational characteristics. Considerations about paediatric cancers are thus summarized in a dedicated Paediatric cancer Section within each Chapter. With a view to fostering appropriate health polices, specific recommendations on paediatric cancers are included therein.