1. Work Package 9: Childhood Cancers
JARC General Assembly 16th Sept Milan, Italy
Joint Action ‘724161/JARC’ has received funding from the European Union’s Health Programme ( )

2. WP 9: Childhood Cancers
Task 9.1: Make recommendations on accessibility of essential treatments across Europe
Task 9.2: Make recommendations on access to innovative therapies through referrals to clinical trials across Europe
Task 9.3: Identify solutions for optimal care and research for young people with extremely rare cancers
Task 9.4: Make recommendations on models of healthcare for survivors of childhood cancers based on prior projects.

3. WP 9: Childhood Cancers
24 Partners: SIOPE (EU) • INT (IT) • EASP (ES) • UP (HU) • FFIS (ES) • INCa (FR) • UVEG (ES) • VHIR (ES) • FISABIO (ES) • GPOH (DE) • MoH Republic of Cyprus (CY) • PanCare (EU) • OUS-KSSB (NO) • HSE (IE) • ECL (EU) • BCR (BE) • CCI Europe (EU) • CCRI (AT) • UCL- ICH (UK) • Bambino Gesu (IT) • Uni Padova (IT) • Institut Curie (FR) • ECPC (EU) • Greek Working Group for Rare Cancers and for Childhood Cancer (EL)
INT Fondazione IRCCD Istituto Nazionale dei Tumori - UP Pecsi Tudomanyegyetem/University of Pecs - EASP Escuela Andaluza de Salud Publica/Andalusian School of Public Health - FFIS Fundacion para la Formacion e investigacion sanitarias de la region de Murcia - INCa Institut National du Cancer - UVEG Universitat de Valencia - VHIR Fundacio Hospital Universitari Vall d'Hebron - FISABIO Fundación para el fomento de la investigación sanitaria y biomédica de la Comunitat Valenciana - GPOH German Society of Paediatric Oncology /University of Tuebingen - MoH Republic of Cyprus Ministry - PANCARE - OUS-KSSB Oslo Universitetssykehus HF/Oslo University Hospital - HSE Health Service Executive - ECL Association of European Cancer Leagues - BCR Belgian Cancer Registry - CCI Europe - CCRI Children Cancer Research Institute - UCL-ICH University College of London-Institute of Child Health - Bambino Gesu Ospedale Pediatrico -  Uni Padova -  Intitut Curie - Greek Working Group for Rare Cancers and for Childhood Cancer – ECPC

4. SIOPE Strategic Plan Objective 4: Equal Access
JARC WP9: Childhood Cancers
Task 9.1: To make recommendations to solve barriers in accessibility of standard treatments across Europe
SIOPE Strategic Plan Objective 4: Equal Access

5. Task 9.1: Essential treatments
Eighty percent (80 %) of children and adolescents with cancer can be disease-free at 5 years provided that they receive current multidisciplinary treatments
Are the essential medicines to cure, support and palliate children and adolescents with cancer available and accessible across Europe?
What improvements can we request to decision makers based on the current situation and needs?

6. Task 9.1: Essential treatments
Milestones and Deliverables:
M9.1: Survey completed & available (Month 21 – July 2018)
M9.2: Mapping of issues to solve done (Month 22 – Aug 2018)
M9.3: Consensus meeting on recommendations (Month 30 – April 2019*)
D9.1: Report summarising survey results/issues and recommendations (M36  M30: April/May 2019)
*or May 2019
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

7. Task 9.1: Essential treatments
SCOPE:
Medicines: Standard anticancer agents and palliative and pain control medicines incl. for administration during procedures
Radiotherapy (RT): Equipment and personnel qualified to work with children
STRATEGIC PARTNERS:
Medicines: CCI Europe, ESOP and ESMO
Radiotherapy (RT): CCI Europe, QUARTET (SIOPE committee with EORTC), dialogue ongoing with ESTRO and researchers in the field
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

8. Task 9.1: Essential treatments
METHODOLOGY (Medicines):
Core Working Group to steer the project
Electronic survey focusing on children’s needs across Europe
Drafting of policy recommendations and final consensus meeting
METHODOLOGY (RT):
Mapping of initiatives and resources
Stakeholder engagement/Core Working Group TBC
Survey of paediatric haemato-oncology RT across Europe TBC
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

9. Task 9.1: Essential treatments
PROGRESS YEAR 1* - MEDICINES
Core Working Group of experts constituted
SIOPE – CCI Europe – ESOP – ESMO
1st face-to-face meeting: 14 Sept. 2017, Brussels, BE
Agreement on survey content and methodology (preliminary):
List of medicines
Regional coverage
Survey questions
Target respondents
Methods of data collection
* (Oct – Sept. 2017)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

10. Task 9.1: Essential treatments
ACTION PLAN YEAR 2* - MEDICINES
Electronic survey launch in early 2018, in the meantime:
List of medicines: Validation by experts in different disease areas
List of countries and questions: 1-2 TC exchanges to finalise
Fostering participation at annual meetings of respondents:
ESOP: Jan./March SIOPE: Jan./Feb CCI Europe: April 2018
Preliminary survey results: approx. 6 months from launch
Milestone 9.1 (Month 21 – July 2018): Survey questionnaire completed & available
Milestone 9.2 (Month 22 – August 2018): Mapping of accessibility and issues done
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

11. Task 9.1: Essential treatments
PROGRESS YEAR 1 - RT
Cooperation initiated with key stakeholders/researchers:
1st face-to-face exchange: 13 Sept. 2017, Brussels, BE
Scope of Task refined:
Consolidating information on availability of equipment incl. proton therapy and qualified radiation oncology personnel in each European country;
Putting forward guidelines on requirements for radiation oncology personnel working with children.
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

12. Task 9.1: Essential treatments
ACTION PLAN YEAR 2* - RT
Constitution of Core Working Group to steer the project
TBC
Defining methodologies to:
Consolidate updated information on equipment incl. proton therapy
Put forward guidelines on RT personnel working with children
Implementation of methodologies
Milestone 9.1 (Month 21 – July 2018): Survey questionnaire completed & available
Milestone 9.2 (Month 22 – August 2018): Mapping of accessibility and issues done
*(focus: Oct – April 2018)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

13. SIOPE Strategic Plan Objective 1: Innovative treatments
JARC WP9: Childhood Cancers
Task 9.2: To make recommendations to increase and facilitate timely access to innovative therapies within clinical trials
SIOPE Strategic Plan Objective 1: Innovative treatments

14. Task 9.2: Innovative therapies
Less than twenty percent (<20%) of children with relapsed cancer in ITCC centres are estimated to have access to an innovative therapy through clinical trials. Overall in Europe, this figure is halved to just ten percent (10%)*
What improvements can we request to decision makers to increase and faciliate children’s access to innovation through clinical trials?
*Information provided by ITCC

15. Task 9.2: Innovative therapies
Milestones and Deliverables:
M9.4: Survey on referral patterns completed & available (Month 21 – July 2018)
M9.5/D9.3: List of preclinical models and research teams available (Month 24 – Oct. 2018)
M9.6: Consensus meeting on recommendations (Month 28 – Feb 2019)
D9.2: Report summarising survey results/issues and recommendations (M36  M30: April/May 2019)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

16. Task 9.2: Innovative therapies
SCOPE
Innovative therapies in early clinical trials for patients in relapse/failure
STRATEGIC PARTNERS
CCI Europe, ITCC
METHODOLOGY
First set of recommendations based on experience in ITCC countries on facilitating clinical trial referrals
Recommendations developed and supplemented with input from other countries in Europe
Recommendations consolidated and final consensus meeting
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

17. Task 9.2: Innovative therapies
PROGRESS YEAR 1
1st face-to face meeting: 7 July 2017, Brussels, BE
23 physicians and 11 parents (identified with CCI) from each of the 14 ITCC countries*
(Including preparatory and follow up liaison by /TC)
JARC WP9 partners with interest in Task
1st Draft Recommendations agreed:
Make information on early phase clinical trials across Europe publicly available, easily accessible, and understandable with particular consideration for the needs of parents;
Set up Virtual Tumour Boards to discuss all relapsed patients and define referral paths;
Strengthen cooperation between centres to ensure continuity of care when patients are referred to participate in an early trial;
Continue exploring the S2 certificate policy in relation to early clinical trial participation in view of putting forward concrete proposals;
Explore potential solutions to facilitate travel and accommodation of patients and their family.
* AT, BE, DK, FI, FR, DE, IE, IL, IT, NL, ES, SE, CH, UK (12 EU countries + Switzerland and Israel)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

18. Task 9.2: Innovative therapies
ACTION PLAN YEAR 2*
2nd face-to-face meeting: early 2018
Scope: non-ITCC countries in Europe
Including preparatory and follow up liaison by /TC
Consolidating 2nd Draft Recommendations with inputs from non-ITCC countries
Milestone 9.4 (Month 21 – July 2018): Survey on referral patterns completed & available
*( focus: Oct – April 2018)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

19. Task 9.2: Innovative therapies
Sub-Task: To deliver list of existing preclinical paediatric cancer models & skilled research teams involved in preclinical research
Year 1:
Methodology defined (cell lines, patient-derived xenografts and engineered mouse models will be listed).
Year 2:
Review of paediatric preclinical models:
Commercial collections
Consortiums
Literature review
Milestone 9.5/Deliverable 9.3 (Month 24 – Oct 18): List of paediatric preclinical models and research teams
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

20. SIOPE Strategic Plan Objective 4: Equal Access
JARC WP9: Childhood Cancers
Task 9.3: Identify solutions for optimal care and research for young people with extremely rare cancers
SIOPE Strategic Plan Objective 4: Equal Access

21. Task 9.3: Very Rare Tumours
Extremely rare cancers (<2/1,000,000) are i) extremely rare pathologies in children, such as pleuropulmonary blastoma ii) adult cancers occurring in children, iii) childhood cancers occurring in adults. There is an urgent need to facilitate access to expertise for diagnosis and treatment and to strengthen cooperation between paediatric and adult oncology.
What can we formulate for decision makers to ensure that these specific needs are addressed?

22. Task 9.3: Very Rare Tumours
Milestones and Deliverables:
M9.7: Report on issues raised by care and research for young people with extremely rare cancers (Month 12 – Oct 2017)
D9.2: Report summarising proposals to address VRT in paediatric patients (M36  M30: April/May 2019)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

23. Task 9.3: Very Rare Tumours
SCOPE
VRT Guidelines – VRT Expert advice / Centres of excellence – VRT Research
STRATEGIC PARTNERS
CCI Europe, EXPeRT - European Study Group for Paediatric Rare Tumours
METHODOLOGY
Development of report on specific issues faced by children and adolescents with VRT
Development of draft recommendations incl. based on prior projects (ExPO-r-Net)
Recommendations consolidated and final consensus meeting TBC
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

24. Task 9.3: Very Rare Tumours
PROGRESS YEAR 1
Cooperation established with key partners (e.g. EXPeRT)
1st face-to-face exchange: March 2017, Padova, IT
Streamlining methodology and synergies with ExPO-r-Net /JARC WP4 - Epidemiology
2nd face-to-face exchange: June 2017, Brussels BE
Task presented at ExPO-r-Net final conference and ERN PaedCan Launch event
Analysis of incidence of rare paediatric tumours in Europe
Methodology defined as receiving information from database of RARECAREnet (83 European data bases, ) – Synergies with WP4
Preparation of online questionnaire for parents with CCI:
Awareness of paediatric VRT structures at national level
Perceived need for action to improve paediatric VRT treatment and care
Awareness of patient initiatives (paediatric) on VRT at national level
Milestone 60 submitted (Month 12 – Oct 17): Report on issues raised by care and research for young people with extremely rare cancers
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

25. Task 9.3: Very Rare Tumours
ACTION PLAN YEAR 2*
Launch of survey on paediatric VRT to parents across Europe
1nd face-to-face meeting: 17 Nov. 2017, Frankfurt, DE
Discussion of preliminary survey results
Identifying future orientations
Report on incidence of rare paediatric tumours in Europe
data from , database of RARECAREnet, 83 cancer registries – synergies with WP4
Drafting recommendations on optimal care and research for young people with extremely rare cancers
*( focus: Oct – April 2018)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

26. JARC WP9: Childhood Cancers
Task 9.4: Make recommendations on models of healthcare for survivors of childhood cancers based on prior projects
SIOPE Strategic Plan Objective 6: Improve quality of life of Childhood Cancer Survivors (CCS)

27. Task 9.4: Survivorship
Two-thirds (2/3) of survivors have late-occurring complications due to their treatments. In one-fourth (1/4) complications are severe, and have a strong impact on the daily lives of survivors. Improving quality of life of survivors of childhood cancer is a major goal.
What should we request that policy makers do to effectively help achieve these objectives?

28. Task 9.4: Survivorship Milestones and Deliverables:
M9.8: Consolidated conclusions from EU projects on CCS (Month 18 – April 2018)
M9.9: Consensus meeting on final recommendations (Month 30 – April 2019*)
D9.5: Report summarising guidelines and recommendations on models of care for CCS (M36  M30: April/May 2019)
*or May 2019
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

29. Task 9.4:Survivorship SCOPE STRATEGIC PARTNERS
Survivorship Passport
Surveillance guidelines
Long-Term Follow Up delivery guidelines incl. transition to adult care
STRATEGIC PARTNERS
Community participating to prior EU projects on CCS
METHODOLOGY
Define key policy objectives
Consolidate key messages incl. based on prior project conclusions
Consolidate recommendations and final consensus meeting
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

30. Task 9.4: Survivorship PROGRESS YEAR 1
1st face-to-face meeting: 3 May 2017, Lund, SE
Partners’ roles and interest areas defined
Consolidated information on prior EU projects available
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

31. Task 9.4: Survivorship ACTION PLAN YEAR 2
First draft recommendations to be developed:
Consensus building and exchange by and TC
(2nd face-to-face meeting TBC)
Milestone 9.8 – Month 18 (April 2018): Consolidated conclusions from EU projects on CCS
* (focus Oct – April 2018)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

32. First draft recommendations to be developed:
ACTION PLAN YEAR 2
First draft recommendations to be developed:
Consensus building and exchange by and TC
(2nd face-to-face meeting TBC)
Milestone 9.8 – Month 18 (April 2018): Consolidated conclusions from EU projects on CCS
* (focus Oct – April 2018)
WHO list includes 24 anticancer medicines (18 cytotoxic and adjuvant medicines, 5 hormones and 2 immunosuppressive medicines) for 10 malignancies

33. THANK YOU