SIOPE Office 10th Anniversary: Who We Are and Where We Came From

If you are reading this newsletter, you are either a member of SIOPE or you know us well through an event, meeting, or a similar occasion. However, how familiar are you with the history of our Society?

Our History

2. Fig 2Let’s take a step back. As a group, SIOPE existed since 1998 in the framework of SIOP (International Society of Paediatric Oncology). Then, exactly 10 years ago, following the revision of its Statute, SIOPE becomes an independent organisation, with a permanent Secretariat and a professional structure in Brussels. In the same year, the newly created SIOPE joined forces with ESSO, EACR, ESMO, ESTRO and EONS and founded the European CanCer Organisation (ECCO) in the same city. 2009 represents a fundamental step stone for our Society, which succeeded in obtaining its first EU-funded grant for the creation of ENCCA, a European Network for Cancer research in Children and Adolescents. This major EU project brought together 34 influential European partner institutions which collaborated for 5 years to structure research in this field and improve the treatment of children and adolescents with cancer. In 2012, SIOPE underwent a second major restructuring, implementing a new membership model – which opened its doors to members of the national paediatric haemato-oncology societies in Europe – and by becoming a completely independent society (legally established under Belgian law as an Association Sans But de Lucre, A.S.B.L.). Since then, many paediatric oncology professionals joined our Society, and today we can welcome in our community more than 1,600 SIOPE members representing 34 European countries. Finally, 2015 was another milestone in the history of SIOPE: after an extensive consensus-building process, the SIOPE Strategic Plan was officially presented to the medical community (at the 2015 European Cancer Congress) and at the EU policy-level (during an event co-organised by SIOPE and the ‘MEPs Against Cancer’ Group at the European Parliament).

What Do We Fight For?

But, before going into details about the Plan and what it entails, we should probably go another step back, at the root of the reason why we are here: what is the problem SIOPE addresses? Today, paediatric tumours are still a threat for children and adolescents in Europe, with a death toll of 6,000 patients every year. Moreover, the over 300,000 European survivors from this disease often suffer from the (sometimes severe) life-long side effects of treatments. Despite the considerable progresses made by paediatric oncology research over the past 50 years, childhood cancer patients still do not have access to the same therapeutic opportunities in different areas of Europe, and innovative treatments are hardly available (especially for cancers with a poor prognosis or the extremely rare ones).

Our Successes

2. Fig 3.pngSince its creation, SIOPE worked to ensure the best possible care and outcome for all children and young people with cancer in Europe and, over the years, it has been able to raise an increasing interest in the challenges faced by childhood cancer patients and professionals. In the EU policy field, for instance, SIOPE achieved considerable results such as the revision of the Clinical Trial Directive (now a Regulation), the wide endorsement of the 2014 Electoral Manifesto, the recent European Parliament vote on a Resolution on the Regulation on Paediatric Medicines and the inclusion of paediatric haemato-oncology in EU initiatives like the European Partnership for Action Against Cancer (EPAAC), the European Reference Networks (ERN) and the EU Joint Action on Rare Cancers (JARC). But SIOPE hasn’t only been involved in advocacy activities: after the success of its first project ENCCA, SIOPE got involved in other important EU-funded projects like ExPO-r-Net, PanCareSurFup and the European Partnership for Action Against Cancer, and it also started other non-EU funded projects such as ACCELERATE and QUARTET (see below). SIOPE also offered different types of education and training opportunities to its members, like the MCCR annual workshop on ‘Methods in Clinical Cancer Research’ and the ESO-SIOPE Masterclass in Paediatric Oncology, offering reductions to attend important congresses in Europe (e.g. the European Cancer Congress, where SIOPE leads the paediatric sessions). Finally, SIOPE collaboration partners have issued an incredible amount of high-level publications so far, ranging from scientific papers (mainly in the framework of ENCCA), to policy publications, to SIOPE-branded position papers and press releases (see complete lists here).

A Vision Made True

2. Fig 1Thanks to these several SIOPE activities, paediatric haemato-oncology stakeholders in Europe were able to exchage their opinions and ended up defining a clear vision of the future: a future where all children – no matter where they live – have access to state-of-the-art treatments, where the cure-rate for all types of paediatric cancers – even the extremely rare, or those with a poor prognosis – steadily grows, and where all childhood cancer survivors can enjoy a fulfilling life without late side effects of treatment. Our Society managed to have all key stakeholders on board – especially the parents, patients, and survivors’ advocates from the Europe Regional Committee of Childhood Cancer International (CCI) – and get them to work together to identify the current obstacles to this vision and define a strategy to make it a reality. This was, in a nutshell, the idea behind the SIOPE Strategic Plan – ‘A European Cancer Plan for Children and Adolescents. Based upon 7 objectives – ranging from drug development to the improvement of survivors’ lives on the long-term – the need for a Plan was first recognised in the framework of the European Network for Cancer research in Children and Adolescents (ENCCA), and the first drafts of the document were elaborated by an expert working group called “ENCCA Long Term Sustainability Working Group”. After the end of ENCCA, SIOPE took the lead of the Strategic Plan initiative, seeking an even broader consensus from the European Clinical Trial Groups in paediatric oncology (ECTGs) and the National Paediatric Haematology-Oncology Societies (NAPHOS). Backed by an extensive endorsement and commitment to get to action from all stakeholders, the SIOPE Strategic Plan was finalised, published and officially launched in Europe. The outcome consists in 7 key objectives for the next decade, and in an effective action plan to tackle each of them:
  1. Innovative treatments: to introduce safe and effective innovative treatments into standard care;
  2. Precision cancer medicine: to use improved risk classification as well as biological characteristics of both the tumour and patient (such as molecular and immunological factors) to help guide decisions on which therapies to use;
  3. Tumour biology: to increase knowledge of tumour biology and speed up translation from basic research to clinical care to benefit patients;
  4. Equal access: to bring about equal access across Europe to standard care (in both diagnosis and treatment), expertise and clinical research;
  5. TYA: to address the specific needs of teenagers and young adults (TYA), in cooperation with adult oncology;
  6. Quality of survivorship: to address the consequences of cancer treatment such as long-term side effects, to better understand the genetic background/risk of an individual, and to improve quality of life of childhood cancer survivors;
  7. Causes of cancer: to understand the causes of paediatric cancers and to address prevention wherever possible.
Today, the SIOPE Plan is in the implementation phase, and l­­­ast year we made remarkable progresses in this direction. After setting up various cross-tumour platforms and projects to address the Plan’s variables, and defining the leaders responsible for the implementation of each of the Plan’s objectives, SIOPE carried out several successful initiatives, such as the developments in the ‘Survivorship Passport’ initiative, the consolidation of the ACCELERATE Multistakeholder Platform and the successful ACCELERATE events, the leadership of the JARC Paediatric Oncology Work Package, and (to learn more, please see article in this Newsletter “Achievements in Implementing SIOPE Strategic Plan”). These are just some examples of what we did to address the needs identified in the SIOPE ‘European Cancer Plan for Children and Adolescents’, a Plan which united the European community around the same objectives, managed to raise awareness and already generated some action from those who care for the future of childhood cancer patients and survivors.