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