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CANCER PREVENTION VS CANCER TREATMENT: THE RARE TUMOUR RISK SYNDROMES BATTLE

Objective

Rare tumour risk syndromes (RTRS) are rare diseases, affecting 5 per 10.000 people or less and caused by heritable genetic variants. In RTRS, the lifetime risk to develop various cancers can be as high as 100%, and patients have a 50% chance of transmitting the disease to their offspring. When undiagnosed or not surveilled, many asymptomatic RTRS patients develop particularly aggressive cancers, leading to premature death, severely impacting theirs and their families’ health and wellbeing. Cancers in RTRS can be prevented and survival rates maximized if asymptomatic RTRS patients are intensively surveilled for RTRS-prone organs, cancer-prone organs are surgically removed prior to disease development, or very small cancerous or pre-cancerous lesions are removed or treated. RTRS are therefore a unique and tangible context for cancer prevention, early diagnosis and treatment with curative intent. However, risk-reduction strategies are not always prioritized in genetically diagnosed and asymptomatic RTRS patients, and most healthcare systems keep on opting for treatment of clinically expressed cancer. This occurs despite the knowledge that hospitalization has the highest weight on advanced cancer healthcare spending. It is therefore urgent to demonstrate the cost-benefit of the application of preventive measures in RTRS syndromes.
The ambition of the PREVENTABLE project is to merge specialized clinical knowledge on RTRS pathways of care, real-life clinical data from RTRS patients and experiences from professionals and patients, with health economic models and social sciences approaches to estimate the cost-benefit of risk-reduction interventions in RTRS and delineate guidelines for its communication among and within clinical teams and RTRS patients. PREVENTABLE project results will be delivered to a diversity of stakeholders, including policy-makers, in order to promote the implementation of cost-effective RTRS patient-centered care in Europe.

Coordinator

I3S - INSTITUTO DE INVESTIGACAO E INOVACAO EM SAUDE DA UNIVERSIDADE DO PORTO
Net EU contribution
€ 1 660 005,00
Address
Rua Alfredo Allen 208
4200-135 Porto
Portugal

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Region
Continente Norte Área Metropolitana do Porto
Activity type
Research Organisations
Other funding
€ 0,00

Participants (13)

Third-party

Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.

CENTRO HOSPITALAR DE SAO JOAO EPE
Portugal
Net EU contribution
€ 106 250,00
Address
Alameda Do Professor Hernani Monteiro
4200 319 Porto

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Region
Continente Norte Área Metropolitana do Porto
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Other funding
€ 0,00
Third-party

Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.

IPATIMUP - INSTITUTO DE PATOLOGIA E IMUNOLOGIA MOLECULAR DA UNIVERSIDADE DO PORTO PCUP
Portugal
Net EU contribution
€ 299 347,25
Address
Rua Julio Amaral De Carvalho 45
4200 135 Porto

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Region
Continente Norte Área Metropolitana do Porto
Activity type
Research Organisations
Other funding
€ 0,00
INSTITUT CATALA D'ONCOLOGIA
Spain
Net EU contribution
€ 200 000,00
Address
Av Gran Via De L'hospitalet 199-203
08908 L'hospitalet Del Llobregat

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Region
Este Cataluña Barcelona
Activity type
Research Organisations
Other funding
€ 0,00
Third-party

Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.

FUNDACIO PRIVADA INSTITUT D'INVESTIGACIO ONCOLOGICA DE VALL-HEBRON (VHIO)
Spain
Net EU contribution
€ 175 000,00
Address
Calle Nazaret 115-117
08035 Barcelona

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Region
Este Cataluña Barcelona
Activity type
Research Organisations
Other funding
€ 0,00
Third-party

Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.

FUNDACIO INSTITUT D'INVESTIGACIO BIOMEDICA DE GIRONA DOCTOR JOSEP TRUETA
Spain
Net EU contribution
€ 0,00
Address
Calle Dr. Castany Sn Edificio De La Mancomunidad 2 Parque Hospitalario Marti Julia
17190 Girona

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Region
Este Cataluña Girona
Activity type
Research Organisations
Other funding
€ 31 250,00
CENTRE HOSPITALIER ROUEN
France
Net EU contribution
€ 296 250,00
Address
Rue De Germont 1
76038 Rouen Cedex

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Region
Normandie Haute-Normandie Seine-Maritime
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Other funding
€ 0,00
Third-party

Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.

CENTRE REGIONAL DE LUTTE CONTRE LE CANCER HENRI BECQUEREL ROUEN
France
Net EU contribution
€ 53 750,00
Address
Rue D'amiens
76038 Rouen Cedex

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Region
Normandie Haute-Normandie Seine-Maritime
Activity type
Research Organisations
Other funding
€ 0,00
STICHTING RADBOUD UNIVERSITAIR MEDISCH CENTRUM
Netherlands
Net EU contribution
€ 350 000,00
Address
Geert Grooteplein 10 Zuid
6525 GA Nijmegen

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Region
Oost-Nederland Gelderland Arnhem/Nijmegen
Activity type
Higher or Secondary Education Establishments
Other funding
€ 0,00
HELSE BERGEN HF
Norway
Net EU contribution
€ 350 000,00
Address
Jonas Lies Vei 65
5021 Bergen

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Region
Norge Vestlandet Vestland
Activity type
Higher or Secondary Education Establishments
Other funding
€ 0,00
UNIVERSITATSKLINIKUM BONN
Germany
Net EU contribution
€ 293 690,00
Address
Venusberg-campus 1
53127 Bonn

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Region
Nordrhein-Westfalen Köln Bonn, Kreisfreie Stadt
Activity type
Higher or Secondary Education Establishments
Other funding
€ 0,00
UNIVERSIDADE NOVA DE LISBOA
Portugal
Net EU contribution
€ 374 895,00
Address
Campus De Campolide
1099 085 Lisboa

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Region
Continente Área Metropolitana de Lisboa Área Metropolitana de Lisboa
Activity type
Higher or Secondary Education Establishments
Other funding
€ 0,00
SOCIEDADE PORTUGUESA DE INOVACAO CONSULTADORIA EMPRESARIAL E FOMENTO DA INOVACAO SA
Portugal
Net EU contribution
€ 226 625,00
Address
Av Marechal Gomes Da Costa 1376 Porto Concelho Foz Do Douro
4150 356 Porto

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
Continente Norte Área Metropolitana do Porto
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Other funding
€ 0,00
EUROPEAN HEALTH MANAGEMENT ASSOCIATION
Belgium
Net EU contribution
€ 256 437,50
Address
Rue Belliard 15-17
1040 Bruxelles

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Region
Région de Bruxelles-Capitale/Brussels Hoofdstedelijk Gewest Région de Bruxelles-Capitale/ Brussels Hoofdstedelijk Gewest Arr. de Bruxelles-Capitale/Arr. Brussel-Hoofdstad
Activity type
Other
Other funding
€ 0,00

Partners (1)

UNIVERSITY OF LANCASTER
United Kingdom
Net EU contribution
€ 0,00
Address
Bailrigg
LA1 4YW Lancaster

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Region
North West (England) Lancashire Lancaster and Wyre
Activity type
Higher or Secondary Education Establishments
Other funding
No data