Since the creation of our Society, our efforts focused on making the voice of paediatric oncology heard at the European level: our profile to date has been enhanced by our successful participation in different European initiatives and projects, and we have become increasingly recognised for promoting better European Union policies for children with cancer. SIOPE deeply engages at the level of the EU decision-making process, and does so by liaising with the key stakeholders in our field, by organising awareness-raising events as well as by producing communication documents, clearly stating which pieces of legislation are backed by our community, as well as which aspects of the policies and legislation should be improved and how. In the last years, SIOPE managed to raise awareness on the numerous challenges paediatric haemato-oncologists face on a daily basis, making sure that our priorities are correctly represented: this is why today the EU institutions consider SIOPE as a key stakeholder.
Policy publications:
- WHO Europe Report on Childhood Cancer Inequalities in Europe. (NB: including External review and comments provided by SIOP Europe)
- European Parliament Health Committee (ENVI) Report: “Strengthening Europe in the fight against cancer: Going Further, Faster” (2020) (NB: Paediatric cancer content developed with SIOPE’s contribution as of page 136, Section 4.2).
- The Rare Cancer Agenda 2030: The Ten Recommendations from the Joint Action on Rare Cancers (September 2019) (NB: includes dedicated Paediatric Cancer Section developed by SIOPE at the end of each Chapter)
SIOPE Policy agenda 2019-2024:
- A Europe for Children & Adolescents with Cancer: Position paper of the European paediatric cancer community (November 2022)
- A European Paediatric Cancer Mission: Aspiration or Reality? (September 2019)
- Childhood Cancer European Elections Manifesto 2019 – 2024 (March 2019)
Joint Action on Rare Cancers:
- The Rare Cancer Agenda 2030: The Ten Recommendations from the Joint Action on Rare Cancers (September 2019) (NB: includes dedicated Paediatric Cancer Section at the end of each Chapter)
- Accessibility of standard treatment for paediatric cancer across Europe (April 2019)
- Facilitating referral of children with cancer to trial centers offering innovative medicines (April 2019)
- Addressing extremely rare cancers in young patients (April 2019)
- Childhood cancer survivorship surveillance ,care, Survivorship Passport (April 2019)
Paediatric & Orphan Regulation:
- 6 Key Recommendations for Boosting Innovation and Access to Paediatric Anticancer Medicines (June 2022)
- Roadmap Response to Inception Impact Assessment on Medicines for Children and Rare Diseases Regulations (2020)
- SIOPE response to Public consultation on Supplementary Protection Certificates (SPC)' (January 2018)
- Press Release: Children with cancer still left behind! SIOPE and Unite2Cure react to the Paediatric Regulation report of the European Commission (November 2017)
- Position Statement: Paediatric Cancer Medicines - Urgent need to speed up life-saving innovation (last updated: September 2017)
- Urgent need to speed up life-saving innovation – Proposal by the Stakeholders (January 2016)
- ‘Will the revised class waiver list make it?' (September 2015)
- SIOPE Briefing for the European Parliament ENVI Committee workshop on EU Paediatric Medicine Regulation (June 2015)
- ‘Creating a unique, multi-stakeholder Paediatric Oncology Platform to improve drug development for children and adolescents with cancer‘, G. Vassal et al., European Journal of Cancer, (November 2014)
- SIOPE response to European Commission's Public Consultation on EU Paediatric Regulation (November 2012)
- SIOPE comments on the update of the priority list of off-patent medicines for children (June 2009)
News Releases:
- News Release: The impact of the EU General Data Protection Regulation on childhood cancer research (August 2022)
- News Release: Outcomes of the SIOP Europe & CCI Europe Webinar for the European Week Against Cancer (June 2022)
- SIOPE/CCI-E News Release: Great initiatives require a flawless implementation: coordination is key and an EU Childhood Cancer Advisory Board is the answer (April 2022)
- SIOPE Press Release: Market Access to New Anticancer Medicines for Children and Adolescents with Cancer in Europe (March 2022)
- SIOPE News Release: On International Childhood Cancer Day, health data sharing takes centre stage (February 2022)
- SIOPE News Release: Policy Webinar on Europe’s Beating Cancer Plan and the EU Mission on Cancer (October 2021)
- SIOPE News Release: Childhood cancer is under the spotlight in Europe's Beating Cancer Plan (February 2021)
- Conect4children Press Release 'Launch of a new public-private partnership to improve clinical trial infrastructure to facilitate the development of new drugs for children in Europe' (May 2018)
- SIOPE Press Release 'A EUROPEAN PAEDIATRIC CANCER MOONSHOT INITIATIVE FOR THE NEXT EU BUDGET ' (February 2018)
- ECL-CRUK-SIOPE Press Release 'IMPORTANCE OF COLLABORATION IN CANCER RESEARCH HIGHLIGHTED AHEAD OF WORLD CANCER DAY 2018' (February 2018)
- ESMO 2017 Press Relase 'Study Identifies Factors that Limit Work Ability of Young Adult Cancer Survivors' (September 2017)
- SIOPE Press Release 'The Importance of Early Collaboration in Developing Paediatric Cancer Medicines' (March 2017)
- ACCELERATE Press Release 'State-of-the-art Cancer Medicines Should Not Forget Children' (March 2017)
- SIOPE Press Release 'The SIOPE Society Day: Children First' (January 2017)
- SIOPE-CRUK-Unite2Cure Press Release 'European Cancer Community Welcomes European Parliament Support for Children with Cancer' (December 2016)
- MAC-CRUK-SIOPE Joint Press Release from Event 'Review of the EU Paediatric Medicines Regulation – Let's do more for children with cancer' (September 2016)
- SIOPE Press Release 'Excellence in Radiotherapy for Children and Adolescents: the QUARTET Project' (May 2016)
- SIOPE - ECCO - ECL - CRUK Joint Press Release for 'World Cancer Day' (February 2016)
- SIOPE Press Release from Event 'International Childhood Cancer Awareness Day 2016' (January 2016)
- SIOPE Press Release 'New Presidency of SIOPE as from 1st January 2016: Martin Schrappe' (January 2016)
- SIOPE Press Release 'SIOPE-MAC Event: 'What can Europe and what can we all do to save more children's lives?' (November 2015)
- SIOPE Press Release 'Childhood cancers in Europe: progress has been made, but much remains to be done, says major report' (September 2015)
- SIOPE Press release 'The EU Data Protection Regulation and the Need for better Childhood Cancer Outcomes' International Childhood Cancer Day 2015 (February 2015)
- SIOPE Press Release Manifesto for Paediatric Oncology endorsed at SIOPE European Parliament event International Childhood Cancer Day 2014 (February 2014)
- SIOPE Press Release 'Let's fight against health inequalities on International Childhood Cancer Day 2014 (15 February)' International Childhood Cancer Day 2014 (February 2014)
- SIOPE Press Release EUROCARE event and Lancet Oncology article: 'More has to be done to enhance cure and quality of cure for children and adolescents with cancer in Europe, study shows' (December 2013)
- SIOPE Press Release International Childhood Cancer Awareness Day 2013 (February 2013)
- SIOPE Press Release HeadSmart child brain tumour awareness initiative launched in Europe (February 2012)
- SIOPE Press Release International Childhood Cancer Awareness Day 2012 (February 2012)
Data Protection Regulation:
- Data protection and research in the European Union: a major step forward, with a step back (October 2020)
- The EU Data Protection Regulation and the Need for better Childhood Cancer Outcomes (February 2015)
Clinical Trials:
- SIOPE comments on the Reflection paper on the use of extrapolation in the development of medicines for paediatrics' (EMA/ 199678/2016/) (January 2018)
- SIOPE Response to the European Commission consultation on ‘Ethical considerations for clinical trials on medicinal products conducted with minors' (August 2016)
- SIOPE response to EMA consultation on ' Draft proposal for an addendum, on transparency, to the “Functional specifications for the EU portal and EU database to be audited - EMA/42176/2014” (February 2015)
- SIOPE response to EMA consultation on ‘Draft Functional specifications for the EU portal and EU database to be audited' (October 2014)
- SIOPE response to the EP resolution on the EU Clinical Trial Regulation (September 2013)
- SIOPE position on the EP resolution on the EU Clinical Trial Regulation (August 2013)
- SIOPE position on the transparency of clinical trials' results in the EU Regulation (May 2013)
- SIOPE proposed amendments to the EU Regulation on Clinical Trials (May 2013)
- Joint position on the EU Regulation on Clinical Trials (January 2013)
- SIOPE position on the EU Regulation on Clinical Trials (December 2012)
- SIOPE response to the European Commission consultation on the Clinical Trials Directive (October 2012)
- SIOPE Concept Paper on the revision of the Clinical Trials Directive (September 2012)
- A joint statement from non-commercial and commercial organisations on the Clinical Trials Directive (September 2012)
Other:
- SIOPE response to European Commission Consultation: Transformation Health and Care in the Digital Single Market (October 2017)
- SIOPE response to European Commission Consultation: Ethical considerations for clinical trials on medicinal products conducted with minors (August 2016)
- Identifying critical steps towards improved access to innovation in cancer care: a European CanCer Organisation position paper. European Journal of Cancer 82 (2017) 193-202
- ECCO Essential Requirements for Quality Cancer Care: Soft Tissue Sarcoma in Adults and Bone Sarcoma. A critical review. Critical Reviews in Oncology/Hematology, Volume 110, February 2017, Pages 94–105
- European Standards of Care for Children with Cancer (2009)
- SIOPE response to the public consultation on rare diseases (February 2008)