the joint action on rare cancers - european commission · 2017. 3. 23. · paolo g. casali...
TRANSCRIPT
![Page 2: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/2.jpg)
![Page 3: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/3.jpg)
rare
diseases
cancer
rare
cancers
![Page 4: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/4.jpg)
rare
cancers
![Page 5: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/5.jpg)
Eur J Cancer 2011;47:2493
1. Pediatric cancers
2. Haematologic rare neoplasms
3. Sarcomas
4. Rare thoracic cancers
5. Neuroendocrine tumours
6. Head & neck cancers
7. Central nervous system tumours
8. Rare female genital cancers
9. Rare urological and male genital tumours
10. Endocrine gland tumours
11. Digestive rare cancers
12. Rare skin cancers & non-cutaneous melanoma
![Page 6: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/6.jpg)
www.jointactionrarecancers.eu
![Page 7: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/7.jpg)
promote good quality and safe care to patients by fostering proper
diagnosis, treatment, follow-up and management of patients
across the Network
empower and involve patients
offer and promote multi-disciplinary advice for complex cases
develop and implement clinical guidelines and cross-border patient
pathways
exchange, gather and disseminate knowledge, evidence and
expertise within and outside the Network
promote collaborative research within the Network
reinforce research and epidemiological surveillance, through
setting up of shared registries
exchange and disseminate knowledge and best practices, in
particular by supporting national centres and networks
![Page 8: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/8.jpg)
Objectives
With regard to RCs in the EU, to improve:
1. Epidemiological surveillance
2. Quality of care through ERNs
3. Clinical practice guidelines
4. Innovation
5. Medical and Patient education
6. Health policy measures
7. Patient empowerement
![Page 9: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/9.jpg)
Work packages
WP
1 Coordination INT, IT
2 Dissemination NKUA, GR
3 Evaluation CSF, FI
4 Epidemiology INT, IT
5 Assuring Quality of Care OECI
6 Clinical practice guidelines DKG, DE
7 Innovation and access to innovation WIV-ISP, BE
8 Medical education UP, HU
9 Childhood Cancers SIOPE
10 Rare Cancer Policy ICO, ES
![Page 10: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/10.jpg)
18 MSs
34 ass. partners
![Page 11: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/11.jpg)
![Page 12: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/12.jpg)
Deliverables…
![Page 13: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/13.jpg)
![Page 14: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/14.jpg)
European Cancer Patients Coalition (ECPC)
University College of London-Institute of Child Health (UCL-ICH)
European School of Oncology (ESO)
European Medicine Agency (EMA)
European Network of Cancer Registry (ENCR)
Joint Research Centre (JRC)
Belgian Cancer Registry (BCR)
Italian National Institute of Health (Istituto Superiore di Sanità)
European Society for Medical Oncology (ESMO)
Istituto Superiore di Sanità (ISS - Rare Best Practice)
European Organisation for Research and Treatment of Cancer (EORTC)
Anticancerfund
Association of European Cancer Leagues (ECL)
European Society of Surgical Oncology (ESSO)
Childhood Cancer International (CCI-Europe)
St. Anna Children's Cancer Research Institute’ (CCRI)
Rare Cancer Europe (RCE)
EFPIA-EuropaBio
University of Milan
Hospital Universitario y Politécnico La Fe. GICT-Cáncer IIS La Fe, (CICT)
Collaborating partners
![Page 15: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/15.jpg)
…..
![Page 16: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/16.jpg)
![Page 17: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/17.jpg)
![Page 18: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/18.jpg)
From the center of expertise...
![Page 19: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/19.jpg)
…to the reference network
![Page 20: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/20.jpg)
Teleconsulting
pathologic diagnosis
multidisciplinary strategic clinical decision
…..
![Page 21: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/21.jpg)
Referral to expert rare cancer pathologists
is crucial for appropriateness
Networks are the best tool for proper
referral
Multidisciplinarity is the best environment
for rare cancer patient healthcare
![Page 22: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/22.jpg)
Medical workload
![Page 23: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/23.jpg)
![Page 24: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/24.jpg)
Patient referral
![Page 25: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/25.jpg)
Research support
observational research / registries
virtual biobanking
clinical trials
…..
![Page 26: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/26.jpg)
«Big data»…
![Page 27: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/27.jpg)
JAMA 1992;268:2420
![Page 28: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/28.jpg)
Clinical decision-making
Methods to combine evidence
New study designs
Surrogate end points
Organization of studies
![Page 29: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/29.jpg)
London, October 3rd
2014
![Page 30: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/30.jpg)
London, April 30th
2015
![Page 31: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/31.jpg)
London, June 30th
2016
![Page 32: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/32.jpg)
Adaptive licensing
“a prospectively planned process
by which an early authorization
in a restricted patient population
is followed by iterative phases
of evidence-gathering
and adaption of the marketing authorization
to broader patient populations”
![Page 33: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/33.jpg)
Quality of care
Clinical Practice Guidelines
![Page 34: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/34.jpg)
![Page 35: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/35.jpg)
Medical & Patient education
![Page 36: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/36.jpg)
![Page 37: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/37.jpg)
![Page 38: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/38.jpg)
![Page 39: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/39.jpg)
![Page 40: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/40.jpg)
![Page 41: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/41.jpg)
![Page 42: the Joint Action on Rare Cancers - European Commission · 2017. 3. 23. · Paolo G. Casali paolo.casali@istitutotumori.mi.it. rare diseases cancer rare cancers. rare cancers. EurJ](https://reader035.vdocuments.net/reader035/viewer/2022070207/60f8495197908474373d74a2/html5/thumbnails/42.jpg)