1. Objectives of Work Package 5 objectives for today Information on centres of expertise for rare cancers WP leader: Sabine Siesling

2. Information network on rare cancers Work Package 5 Aim – To identify the qualification criteria for centres Centres of Expertise (CoE) for rare cancers Deliverable (No: 7) – Report identifying criteria indicating the level/quality of expertise for rare cancers management

3. Information network on rare cancers Milestones ‘Consensus’ meeting on criteria CoE (today) A protocol for the high resolution study Data collection (cancer registries) and analysis Meeting to discuss the results Final dissemination meeting with experts held/report > spring 2014

4. Information network on rare cancers How? with a wide consensus process high resolution studies feedback/discussion on the results Together with partners, collaborators, clinicians, patients, scientific societies, health authorities

5. Information network on rare cancers High resolution study Study with detailed data on i.e. stage and treatment Answering more in depth questions More than the “general” epidemiological / public health study questions (incidence, mortality, survival, prevalence) Possible already gathered in the cancer registry or available but still needs to be registered

6. Information network on rare cancers Partners WP5 Associated partner: INT, ISS, UEDIN, ECPC, NOH, NCR, CSF, OILJ Collaborating partners: RCE (Rare cancers Europe), EPAAC, ESSO, ESO, INSERM (Orphanet), Centre of Leon Bernard, ESMO, LeukaNet, ECCO – Experts (clinicians and patient groups) for selected tumour types!

7. Information network on rare cancers YOU!

8. Information network on rare cancers Criteria for CoE General criteria > all rare tumour types Specific criteria > selection of tumour types

9. Information network on rare cancers General criteria for CoE General criteria for CoE on all rare diseases available – European Union Committee of Experts of rare diseases (EUCERD) – Multidisciplinary scientific society – Patient organizations – Policy makers

10. Information network on rare cancers Possible general criteria for CoE (EUCERD): 1) the attractiveness measured through the volume of cases treated (relation to WP4), 2) the capacity to produce and adhere to clinical guidelines (i.e. staging procedure and treatment), 3) outcomes (i.e. surgical free margins, number of revision surgery, survival and recurrence),

11. Information network on rare cancers Possible general criteria for CoE (EUCERD): 4) the availability of multidisciplinary team, 5) the collaboration with other centers of expertise at national and international level (also for clinical trials). 6) capacity to participate in data collection (clinical research and public health in relation to CR)

12. Information network on rare cancers Only for a selection of rare cancer types Rationale: - Expected difference in clinical management (adherence to guidelines) - Expected difference in clinical outcome - Geographical patterns (risk factors) and trends in incidence - Already work done by other groups - Not extremely rare Specific criteria for CoE and High Resolution Studies

13. Information network on rare cancers Specific criteria for CoE and High Resolution Studies Four groups of rare tumours we focus on; 1. Sarcomas 2. Testicular cancer 3. Neuroendocrine tumours 4. Head And Neck Tumours

14. Information network on rare cancers Criteria for expert groups to develop specific indicators Develop tumour specific indicators for CoE on specific rare tumours preferably based on guidelines All experts involved in diagnostics and treatment for specific tumour Pathology, medical oncology, surgery, radiotherapy, patient advocacy groups

15. Information network on rare cancers Objectives of meeting today 1. A list of the main issues per tumour site 2. The way forward to come to indicators

16. Information network on rare cancers 1. A list of the main issues per tumor site Document circulated with proposal Presentation of key-note 20-25 minutes – What is very important for this specific cancer? – Are there disparities to be expected between hospitals? – Can we identify centres of excellence with main issues? – Are there main issues lacking? – How is the view of the patient? - Proposal of most important issues?

17. Information network on rare cancers 2. The way forward to come to indicators - Continuation of todays meeting - High detailed analysis - Collaboration with other parties for dissemination of results - EORTC/OECI - Role of scientific society - Role of patients - Who else should be involved?

18. Information network on rare cancers Questions and suggestions