Shared data & Cancer registries - Jean-Yves BLAY Prof. of Medical oncology
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15 4 2021
Shared data & Cancer registries
Jean-Yves BLAY
Prof. of Medical oncology
Director of Centre Léon Bérard
Director of the ERN-EURACAN
French Academy of Medicine
President of Unicancer
Disclosures Company Scientific advice Scientific works Symposia & oral communications Abbvie X X Amgen X X X ARIAD X X AstraZeneca X X Bayer X X X BMS X X X Deciphera x x DDB X X EISAI X X X Genomic Health X X Gilead X X GSK X X INNATE PHARMA X (member of the Supervisory committee) INCYTE X IQVIA x x x Jansenn X X LILLY X X Merck Serono X X MSD X X Nanobiotix X x Novartis X X X Novex X X Onxeo X Pfizer X X Pharmamar X X PRA X Roche X X Sanofi Aventis X X Swedish Orphan X X Takeda X Toray X
Shared data & Cancer registries • The revolution of oncology : precision medicine vs biology based oncology (.. emerging rare cancers) • Shared data & registries: • Diagnosis • Epidemiology • Optimal primary treatment is cheaper • Connecting patients and doctors • Academic clinical and translational research
Nosology and treatment
Histology
Nosology & treatment 2021+
Trials on molecular/immune
Histology subgroups
Molecular Trials on somatic genotype?
Stroma characterization SHIVA, SAFIR, MOST
(immune cells…) BASKET !
Example : NTRK fusions across cancers 0.5-1% of all cancers 9000/year in EU? Diagnosis? Treatment?
EURACAN : THE ERN FOR RARE ADULT SOLID CANCERS
Connective tissue
Female genital organs and placenta
Male genital organs, and of the urinary tract
Neuroendocrine system
Digestive tract
Endocrine organs
Head and neck 20% of cancers
Thorax
Skin and eye melanoma
30% of the deaths due to cancer
Brain, spinal cords
Geographical spreading of the
Consortium all over Europe.
2017
66 full members
accross 17 Member
states Cyprus
2020
9 APS accross 7
Member States
2021
42 new members
EURACAN - Lyon_Centre Léon Bérard November 2020
Increase access to pathological diagnosis and associated treatments across all EU Member States develop medical training programmes to increase and harmonise the quality of cares, involve patient advocacy groups and assist them in the wide dissemination of educational tools, implement “roadmaps” for referral and self-referral of patient to expert centers, develop and continuously review Clinical Practice Guidelines (CPGs), initiate and promote novel translational research programs (and associated tools – e.g. set of multinational databases and tumour banks), interact with key national international actors/networks involved in cancer care and research and beyond, with other rare diseases stakeholders.
Shared data & Cancer registries • To improve • Diagnosis • Epidemiology • Optimal primary treatment
From a national to a EU Database
FP6, FP7, H2020 projects
Histological reviews registered in 2010: 14% of major discordances (341 cases)
Cost of the treatments assessed for the initial diagnosis: €2,186,816 vs. final diagnosis: €1,060,174
Histological reviews/molecular biology result in a cost saving of more than €1,000,000
Perrier, et al 1014, 2018, 2020
Healthcare system should ensure that accurate pathology is critical to good
care. Histopathologists should be members of a quality assurance scheme
which allows second opinions to be routine practiceSurvival of sarcoma patients operated in reference
centers (green)
POrdered incidences of sarcomas
and connective tissue tumors in NETSARC Histotypes Histotypes
Total Incidence Ph III RPh II Ph II Total Incidence Ph III RPh II Ph II
& published clinical trials (2013-2016) /10e6/year (2013-2016) /10e6/year
95,104 IncidenceShared data & Cancer registries • To improve • Academic clinical and translational research
• Develop the IT infrastructure
• Define the rare cancer family in major need of a registry
• Discuss the objectives of the registry per each rare cancer family
• Address legal and ethical issues for data collection and data
sharing
• Develop the EURACAN registry governance
16Patient Patient
Registration per domain number number
(Prospect) (Retrospect)
Domain 1- Sarcoma 6 41
Domain 2- Ovarian 35 9
Domain 3 - Rare GU 5
STATUS 08-Jan 30-Sep Evolution Domain 4 - Neuroendocrine 43
# of registered patients 99 453 358% Domain 5 - GI 82
Domain 6 - Endocrine 52
# of eligible patients 45 310 589% Domain 7 - H&N 30 14
# of Patients pending 50 112 124% Domain 8 - Thoracic 26 13
Domain 9 - Skin & Uveal melanoma 6
# of not eligible patients 8 31 288% Domain 10 - CNS 5
Multidomain 20
Total 310 77
Recruitment from 28 investigators from 12
countries
40-50 patients / month since end of May
17Real world European registry of rare actionable fusions
Collection of clinical data from cancer patients
harboring an actionable fusions (NTRK and others)
To describe the survival rate of this population in real-
life practice, according to overall survival (OS)Shared data & Cancer registries • Commu:nication • Connecting patients and doctors • International MDT : quick, easy, cheaper, simpler
COMMUNICATION &
COMMUNICATION AND DISSEMINATION
DISSEMINATION
website Newsletter
New EURACAN website ECP ECP NewsletterConclusions • Rapidly changing oncology • Shared data and registries • For rare and frequent cancers • The roles of the ERNs • Accurate diagnosis • Optimal primary treatment • Natural histories of these new entities • Academic clinical and translational research
Decisions for key
GOVERNANCE EURACAN General Assembly
questions
Board of all HCP full members and associate/affiliated partners
Decisions for daily
management Steering Committee Scientific Advisory
EURACAN Coordinator
domain leaders
Group
6 independant Experts
1 representative per country not already represented
Task force leaders
Outside/inside EU
Patient Advocacy representatives Rare/Frequent cancers/diseases
Transversal Task
Domains (Clinical action)
forces
Leader G1 Sarcoma Leader Guidelines
Leader G2 Rare GYN Leader Research
Leader G3 Rare GU Leader Training/Education
Leader G4 NET Leader Funding/sustainability plan
Leader G5 Rare GI Leader Communication with PAGs
Leader G6 Endocrine Leader Dissemination
Leader G7 Rare H&N Leader Quality Control
Leader G8 Rare Thoracic Leader Diagnosis
Leader G9 Rare Skin
Leader EURACANG10 Rare Brain
- Lyon_Centre Léon Bérard November 2020 EURACAN Governance June 2020You can also read
