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Objectives of Work Package 5 objectives for today. Information on centres of expertise for rare cancers. WP leader: Sabine Siesling. Aim To identify the qualification criteria for centres Centres of Expertise ( CoE ) for rare cancers Deliverable (No: 7) - PowerPoint PPT Presentation
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Objectives of Work Package 5objectives for today
Information on centres of expertise for rare cancers
WP leader: Sabine Siesling
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
Information network on rare cancers
Milestones
Milestones‘Consensus’ meeting on criteria CoE (today)A protocol for the high resolution study Data collection (cancer registries) and analysisMeeting to discuss the results Final dissemination meeting with experts
held/report > spring 2014
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
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
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!
Information network on rare cancers
YOU!
Information network on rare cancers
Criteria for CoE
General criteria > all rare tumour types
Specific criteria > selection of tumour types
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
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),
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)
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
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 cancer3.Neuroendocrine tumours 4.Head And Neck Tumours
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
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
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?
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?
Information network on rare cancers
Questions and suggestions
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