Timeline​

ENCCA WP 17: Creating a European network for teenagers and young adults with cancer (ENTYAC) - this promises to be an exciting opportunity for leaders in the field to come together and develop a shared skills and curriculum framework for doctors who treat teenagers and young adults with cancer.

 

Objective

The European Network for Cancer Research in Children and Adolescents (ENCCA) have an overall aim to create a framework of professionals and centres who lead in TYA oncology to share practice, promoting and developing research initiatives to improve outcomes leading to service development, interdisciplinary support and the development of specific practice guidance of relevance to TYA with cancer. The aims of WP17 are as follows:

 

Aims

  1. Create European Steering Groups of leading professionals and stakeholders in TYA oncology to share practice and promote service development, interdisciplinary support and develop specific practice guidance.
  2. Identification of TYA-appropriate educational opportunities for professionals within Europe.
  3. Identification of existing trials and opportunities for young people, aged 5-25, to be enrolled in clinical trials for common TYA.
  4. Development of key agreed research objectives for the TYA oncology Framework with a proposed time-table.
  5. Development of the questionnaire pertaining to fertility preservation guidelines in different institutions and countries.
  6. Establishment of links to patient and support organisations.

 

Achievements of the Tasks of WP17 

    News and Events

    ENTYAC 2015

    ENTYAC was formed to bridge the divide in health research and innovation, specifically for TYA with cancer. There is an urgent need for health service innovation in the field of TYA cancer in Europe, where there are inconsistent, unknown or unsatisfactory clinical outcomes. ENTYAC is developing a research framework focussing on generating evidence, patterns of similarity and of difference and new remedial actions. A document containing an overview of ENTYAC can be found here.


    Please let us know if you are involved in any activities in your area which we could support or tell others about. Contact Dan Stark (d.p.stark@leeds.ac.uk) or Preet Birk (g.k.birk@leeds.ac.uk).

     

      
    Achievements
      
    2014
    • Continue to develop individuals/groups in EU interested in TYA affiliated members of WP17, to help drive the sustainability of the project.
    • Development of ENCCA website, information pages and forums for professionals and TYA with cancer.
    17.1 Creating a European Multidisciplinary Framework for TYA with Cancer
    2014
    • ENTYAC Second International Course on Adolescents and Young Adults with Cancer (March 2014, Madrid) – over 180 delegates
    • Epidemiology Workshop (June 2014, Amsterdam)
    • Medical curriculum Summit (July 2014, London). A summary of this meeting can be found hereENCCA Curriculum summit meeting - summary.pdf.
    • Teenage Cancer Trust Conference 2014 (July 2014, London)
    • Clinical Trial Leaders meeting (September 2014)
    • Next professional survey (Autumn 2014) to build upon competencies identified in July 2014 to ask which professionals have skills to meet these TYA patients' needs and therefore identify work-force requirements and any new roles to provide the skill mix required for TYA multi-professional teams by Autumn 2014.
    17.2 Developing TYA multi-professional education
    2014
    • Over the next twelve months analysis of accrual rates for young people with early onset carcinomas will be determined.
    • Finalising a database of open trials for relevant cancers more widely using the European trials register.
    • Links have been formed with the Experimental Cancers Medicines Network to form a TYA strategy allowing teenagers access to early phase trials and working with the Association of British Pharmaceutical Industry to look at the most efficient way to implement appropriate age eligibility criteria for industry trials.
    • An agreement in place that all NIHR Cancer Trials entering the portfolio will have a lower age of 16 years, following extensive interactions with the National Cancer Research Institute Clinical Studies Groups and the chairs forum.
    • Compilation of a report based on analysis of open trials across Europe.
    17.3 Improving access to clinical trials for teenagers and young adults
    2014
    • The group commenced a review of available TYA tumour samples from existing registries in the UK and intends to extend this to registries in other countries.
    • "Pathways to Diagnosis" preparing for data collection due to commence later in 2014 to be completed using online questionnaires by patients, first contact clinician and specialist clinician. The online collection portal is being developed by the University of Leeds and will be used by centres from the United Kingdom, Sweden, Denmark, France, Germany, Italy, Spain, Netherlands and Hungary. These centres will help to translate the questionnaires, the study documents and apply for ethical approval in their countries.
    17.4 Developing a European TYA Research Initiative
    2014
    • Review scoping preservation practice across Europe has been initiated. Questionnaire includes questions like current fertility preservation policies, legal aspects in EU countries, recommendations, guidelines, education and information.
    • In co-ordination with PanCareSurFup project to disseminate good practice further in wider late effects, by developing information cards.
    • A literature review on second cancers arising after pediatric cancer is ongoing. With the aim to work to tailor information and educational interventions for secondary prevention specific for delivery to TYA and to identify prevention strategies in these second cancers, that might be implemented in TYA in the future.
    • To prepare to disseminate prevention information to TYA cancer survivors.
    • To include in future ENCCA patient and professional surveys, known educational resources across EU on cancer prevention, whether second or first tumours.
    • To begin to disseminate cancer prevention strategies to currently healthy TYA across the EU (June 2014).
    17.5 Promote healthy lifestyles in TYA population and cancer survivors
    2014
    • TYA webpage and TYA/service user forum development is ongoing.
    17.6 Establish links to patient and support organisations
      
    Achievements
      
    2013
    • Strategy and publications, research delivery and sustainability under Horizon 2020 discussed and agreed.
    • Questionnaire concerning TYA cancer services in the European Union finalised and sent out in October 2013. With responses (n=116) from Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Switzerland and the UK. Analysis ongoing.
    17.1 Creating a European Multidisciplinary Framework for TYA with Cancer
    2013
    17.2 Developing TYA multi-professional education
    2013
    • Registration of open trials in Europe for major TYA tumour groups has been completed for the UK Cancer Research Network trials. EU trial recruitment in patients has also been completed and is currently being analysed.

    17.3 Improving access to clinical trials for teenagers and young adults
    2013
    • A consensus on current key research objectives for TYA cancer in EU was reached and these include: bio banking, establishment Europe-wide TYA information network, diagnostic delay and models of health care.
    • Integrated delayed diagnosis into a questionnaire for TYA leaders.
    • Launch of "Pathways to diagnosis" pilot study.
    • Key clinical and epidemiological experts with an interest in TYA cancer who could form part of an International consortium to prioritise research areas and drive forward initiatives using existing data met at ENTYAC (2013).
    • An ECMC TYA Network Meeting was held in December 2013 to develop a consistent approach between adult and paediatric centres for trials with TYA cancer patients. The role of this group was to enhance the recognition of TYA in the ECMC interface, be a voice for industry in order to try and change the approach to drug availability and to improve the communication between adult and paediatric sites about the availability of studies.
    • Collaborative work was undertaken alongside the UK National Clinical Research Network TYA studies group on Early Phase Trials in TYA with cancer.
    • Developed links with French and Italian TYA epidemiologists following presentation and workshop session at SIOP.
    17.4 Developing a European TYA Research Initiative
    2013
    • Expert committee members met in April 2013 to discuss the ethical and legal aspects of fertility preservation and reached a consensus. The findings of this were presented at ECCO (September 2013).
    • A document scoping fertility preservation practices in different institutions and countries was put together (July 2013).
    • Parent and patient participant involvement groups have forged links with ICCCPO, TCT, ECPC and SIOP and a survey of patient opinions were obtained (n=413) in 12 European languages including Romanian, German, Spanish, French and Italian. Analysis of this is ongoing.
    • Dissemination of information for an overall framework for the TYA network, fertility preservation guidelines, bone tumours and TYA, TYA service structures (GPOH) have been published.
    17.5 Promote healthy lifestyles in TYA population and cancer survivors
    2013
    • Links are in place with the ICCCPO, TCT, ECPC, and SIOPE as well as organisations in other EU countries.
    • Lists of patient organisations were compiled and voluntary sector organisations across the EU were identified. This resulted in an agreed EU list of patient organisations with TYA interests.
    • Invited to speak at a conference organised by the International Confederation of Childhood Cancer Parent Organisation (ICCCPO 2013) about working with young people and involving them in research.
    • Young people were involved in all aspects of WP17. For example two young people (one from Germany, one from England) presented and were part of a panel at the 1st ENTYAC European Course on Teenagers and Young Adults with Cancer.
    17.6 Establish links to patient and support organisations
      
    Achievements
      
    2011-12
    • Developed a questionnaire, benchmarking TYA cancer professional and service developments for distribution.
    • European steering group developed - 18 leaders, in their nations and their clinical and research disciplines, in the management of TYA with cancer.
    • TYA oncology framework was developed, created and agreed.
    • Started to widen the associate membership and drive forward the next phases of the project.
    17.1 Creating a European Multidisciplinary Framework for TYA with Cancer
    2011-12
    • Education content for SIOP 2012, EONS 2012, European School of Oncology 2012, TCT Conference 2012.
    • Started to collate educational activities across countries to be promoted through the ENCCA website and national TYA organisations.
    • Links with WP15 and the European School of Oncology in place. 
    • ENCCA/TCT session held at SIOP (October 2012)
    17.2 Developing TYA multi-professional education
    2011-12
    • "EU trials recruitment for TYA" outline was in development. Highlighted mechanisms to change age-based eligibility criteria in early phase and other trials.
    • Requested data from the EORTC database for TYA data in trials across Europe to compare estimated cancer incidence to provide an estimated accrual rate by country.
    17.3 Improving access to clinical trials for teenagers and young adults
    2011-12
    17.4 Developing a European TYA Research Initiative
    2011-12
    17.5 Promote healthy lifestyles in TYA population and cancer survivors
    2011-12
    • Survey of EU TYA Cancer patients and list of patient organisations started.
    • Identified voluntary sector organisations across the EU which can be brought together.
    • Developed central guidance on success in scoping and including patients and carers in services and research.
    • Met with the president of the European Cancer Patient Coalition (ECPC), and planned collaborative work alongside the UK national Clinical Research Network TYA consumers group.
    • Survey sent via ICCCPO, TCT, ECPC and SIOPE to invite participation and collaboration with other countries, and to map what support is available for TYAs with cancer and their families. A data base of results was made.
    • Discussions to provide a TYA forum by hosting a closed website for TYAs within the main site.
    17.6 Establish links to patient and support organisations