PREVENTABLE Project

The PREVENTABLE project was created to assess the clinical, social and financial impact of applying multidisciplinary and specialized care to prevent advanced disease in families suffering from Rare tumour risk syndromes (RTRS).

PREVENTABLE started in January 2023 and is a 3-year Horizon Europe project under the call Ensuring access to innovative, sustainable and high-quality health care (HORIZON-HLTH-2022-CARE-08, Grant Agreement 101095483), funded by the European Health and Digital Executive Agency (HaDEA).

The project integrates several EU and two non-EU partners, including nine healthcare centres experts in the eight types of RTRS, from Portugal, Spain, France, the Netherlands, Norway and Germany; and Healthcare Providers of the European Reference Network on Tumour Risk Syndromes (ERN GENTURIS). The consortium is also composed of experts in the fields of health economics and behavioural science models, multidisciplinary innovation and organisational networking.

Aim & Objectives

In a complex disease context such is the case of RTRS, consensus clinical guidelines and cumulative experience and knowledge of RTRS-specialized teams is essential for the proper management of the diseases.

The PREVENTABLE project aims at merging specialized clinical knowledge on RTRS pathways of care, real-life clinical data (from patients or professionals), with health economic models and social sciences approaches. Combining this knowledge will support the evaluation of the cost-benefit of risk-reduction interventions in RTRS and the establishment of guidelines for its communication among clinical teams and RTRS patients, ultimately settling a cost-effective RTRS patient-focused care at the European level.

More specifically, the PREVENTABLE project has the following objectives:

Why is our mission important

Intensive surveillance and the risk-reduction strategies for genetically undiagnosed or asymptomatic RTRS patients are the best way to safeguard the best interest of RTRS patients and their families, while minimizing healthcare burden associated with the treatment of RTRS patients with clinically expressed cancers.

What drives us

Implementation of cancer risk-reduction measures in asymptomatic RTRS patients will increase RTRS patient’s life-expectancy and healthy aging.

It is possible to financially estimate on disease prevention in RTRS.

Risk-reduction in all asymptomatic carriers of a family is less costly than treatment of a few carriers with advanced disease.

Raising awareness about RTRS will improve recognition, diagnosis and clinical outcomes, and provide the missing tools for policy makers to promote informed risk-reduction options in healthcare systems, transnationally in EU.

Who we are

PREVENTABLE is a multidisciplinary consortium with professionals from the most varied fields. It is constituted by 9 full partners, 5 affiliated entities and 1 associated partner spread throughout 8 European countries.

8

European Countries

6 EU Countries

Portugal
Spain
France
Belgium
The Netherlands
Germany

2 Non-EU Countries

The United Kingdom
Norway

15

Partner Institutions

Fields of Action

Clinical Diagnosis, Management &
Guideline Design
Health Economics & Cost-Benefit Models
Social and Behavioural Sciences
IT and Software Applications
Hospital Management
Innovation & Organisational Networking
Media Production

Portugal

i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto

i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto

i3S, rated with “Excellent” (2019) is dedicated to research and innovation in basic, applied and translational Health and Life sciences. It focuses on 3 research programs addressing major societal challenges as cancer, infectious diseases, neurologic disorders and regenerative medicine.
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Portugal

CHSJ - Centro Hospitalar de São João

CHSJ - Centro Hospitalar de São João

Information will be available soon

Portugal

IPATIMUP – Instituto de Patologia e Imunologia Molecular da Universidade do Porto

IPATIMUP – Instituto de Patologia e Imunologia Molecular da Universidade do Porto

The Institute of Molecular Pathology and Immunology of the University of Porto – Ipatimup – is a private non-profit association of public utility, established in 1989 under the aegis of the University of Porto. The Ipatimup is an Associated Laboratory of the Ministry of Science and Higher Education since 2000. The Ipatimup aims to understand the causes and evolution of human oncologic diseases to help in the early diagnosis, maximize the treatment efficiency, improve the quality of patient’s life and to reduce the cancer incidence in the population

Portugal

SPI – Sociedade Portuguesa de Inovação

SPI – Sociedade Portuguesa de Inovação

SPI is a consulting firm with a deep knowledge of the private and public sectors, as well as the processes that allow its clients to foster innovation, be competitive and generate growth. The Group includes SPI, SPI Azores, SPI China, SPI Spain, SPI USA, SPI Ventures, Turivã, Herdade da Torre Vã and an affiliate office in Brussels.
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Portugal

UNL – Universidade Nova de Lisboa

UNL – Universidade Nova de Lisboa

Information will be available soon

Spain

ICO – Institut Català d’Oncologia

ICO – Institut Català d’Oncologia

Information will be available soon

Spain

VHIO – Vall d’Hebron Institute of Oncology

VHIO – Vall d’Hebron Institute of Oncology

HOSPITAL VALL D’HEBRON (HVH) was born in 1955 with the creation of the General Hospital: a public, university and community hospital located in Barcelona. Gradually, it became the largest hospital complex in Catalonia and one of the largest in Spain. In 2016, the Vall d’Hebron Barcelona Hospital Campus was officially opened. This project enhances four different institutions: Vall d’Hebron University Hospital, Vall d’Hebron Research Institute, Vall d’Hebron Institute of Oncology and Multiple Sclerosis Centre of Catalonia, which excel in care, research, teaching, management and innovation

Spain

IDIBGI - Institut d'Investigació Biomèdica de Girona

IDIBGI - Institut d'Investigació Biomèdica de Girona

Information will be available soon

France

CHU Rouen – Centre Hospitalier Universitaire de Rouen

CHU Rouen – Centre Hospitalier Universitaire de Rouen

The genetics department at CHU Rouen – Centre Hospitalo-Universitaire de Rouen offers a comprehensive range of activities, including clinical genetic consultations for prenatal and postnatal care, as well as molecular diagnostics for monogenic and genomic diseases. With a focus in the fields of neurogenetics and oncogenetics (Lynch and CMMR-D syndromes, Li-Fraumeni syndrome, hereditary predisposition to breast and ovarian cancer, etc).
The department aims to provide accurate diagnosis, effective management, and genetic counseling to patients and families.
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France

CHB Rouen – Centre Regional de Lutte Contre Le Cancer Henri Becquerel Rouen

CHB Rouen – Centre Regional de Lutte Contre Le Cancer Henri Becquerel Rouen

Henri Becquerel Center is a comprehensive cancer center in Rouen, Normandy, France. This non-profit hospital is involved in care and research in the field of the cancer, with specific scopes in breast and gynaecologic cancers, head and neck cancers, brain tumors and haematologic malignancies.

Netherlands

Radboud – Stichting Radboud Universitair Medisch Centrum

Radboud – Stichting Radboud Universitair Medisch Centrum

Information will be available soon

Norway

HUH - Helse Bergen HF

HUH - Helse Bergen HF

Information will be available soon

Germany

UKB – Universitätsklinikum Bonn

UKB – Universitätsklinikum Bonn

Information will be available soon

Belgium

EHMA – European Health Management Association

EHMA – European Health Management Association

EHMA is a non-profit membership organisation that focusses on enhancing the capacity and capability of health management to deliver high-quality healthcare. Since 1982, EHMA has helped drive solutions and ideas to enable resilient health systems to spread knowledge on effective health management to benefit European citizens and communities

United Kingdom

LU - Lancaster University

LU - Lancaster University

Information will be available soon

Our impact

  1. Enhance RTRS healthcare management by providing new approaches and tools to estimate real health costs of prevention vs. treatment, supporting healthcare decision and policymakers.
  2. Improve the clinical outcome of RTRS patients’ and their high-risk relatives and decrease the costs of RTRS disease management by promoting prevention over treatment.
  3. Support management of RTRS pathways of care and better opportunities for healthcare professionals and providers, optimising the use of healthcare resources with cost-effective measures.
  4. Promote equal healthcare opportunities for RTRS patients regardless of their gender, social status or ethnicity, by providing guidelines for bidirectional communication between clinical teams and patients concerning prevention-related pathways of care, allowing informed decisions on preventive healthcare.
  5. Promote health and encourage disease prevention, by shifting from hospital-centred to community-based, people-centred and integrated healthcare structures, successfully embedding technological innovations that meet public health needs, while patient safety and quality of services is increased.
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