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.[Know more]

Portugal

CHSJ - Centro Hospitalar de São João

CHSJ - Centro Hospitalar de São João

CHUSJ strives to excel in healthcare provision and innovation to become a healthcare industry leader. Its mission revolves around clinical care, teaching, and research. CHUSJ prioritizes clinical trials to offer early access to innovative therapies, contributing to societal well-being by ensuring the safety and efficacy of new treatments.[Know More]

Portugal

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

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

IPATIMUP is an non-profit association aiming 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[Know More]

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.[Know more]

Portugal

UNL – Universidade Nova de Lisboa

UNL – Universidade Nova de Lisboa

Established in 1978 as part of Universidade Nova de Lisboa, Nova School of Business (NOVA SBEª) & Economics is in the top 25 European Business Schools (Financial Times) and is the only Portuguese school to hold the Eduniversal 5 Palms distinction, confirming its category of Universal Business School.[Know More]

Spain

ICO – Institut Català d’Oncologia

ICO – Institut Català d’Oncologia

ICO is a key oncologic center, serving 2,5 million people and  collaborating with 4 general hospitals and about 20 community hospitals.
ICO offers comprehensive cancer services, including Medical Oncology, Radiation Oncology, Clinical Hematology, and Palliative Care, catering to the needs of patients[Know More]

Spain

VHIO – Vall d’Hebron Institute of Oncology

VHIO – Vall d’Hebron Institute of Oncology

VHIO was born with the creation of the General Hospital: a public, university and community hospital in Barcelona. In 2016, Vall d’Hebron Institute of Oncology was officially opened to support the Vall d’Hebron Barcelona Hospital Campus which excels in care, research, teaching, management and innovation.[Know More]

Spain

IDIBGI - Institut d'Investigació Biomèdica de Girona

IDIBGI - Institut d'Investigació Biomèdica de Girona

(IDIBGI) conducts translational research across 23 groups in five scientific areas, with over 400 professionals. Supported by institutions including the Generalitat de Catalunya and the University of Girona, IDIBGI collaborates with regional health organizations and educational bodies.[Know More]

France

CHU Rouen – Centre Hospitalier Universitaire de Rouen

CHU Rouen – Centre Hospitalier Universitaire de Rouen

CHU Rouen provides clinical consultations for molecular diagnostics of various genetic diseases focusing on syndromes like Lynch, CMMR-D, Li-Fraumeni, and hereditary breast and ovarian cancer predisposition by offering accurate diagnosis, effective management, and genetic counseling.[Know more]

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.[Know More]

Netherlands

Radboud – Stichting Radboud Universitair Medisch Centrum

Radboud – Stichting Radboud Universitair Medisch Centrum

Radboud Universitair Medisch Centrum (Radboudumc) is a leading institution focused on patient care, research, and education.
It emphasizes innovation, collaboration, and personalized healthcare, with a focus on prevention, artificial intelligence, molecular disease mechanisms, and training future professionals.[Know More]

Norway

HUH - Helse Bergen HF

HUH - Helse Bergen HF

Helse Bergen HF invests in medical and health-related research and innovation. Its research spans various cutting-edge fields, emphasizing both depth and breadth. With its specialized functions and high expertise, Helse Bergen HF plays a crucial role in providing research-based patient care, as well as educating and training health professionals.[Know More]

Germany

UKB – Universitätsklinikum Bonn

UKB – Universitätsklinikum Bonn

Institut für Humangenetik at University Hospital Bonn offers comprehensive services for patients and physicians, focusing primarily on hereditary oncological diseases by providing consultations, clinical studies, and advanced molecular diagnostic methods for patients and Collaborating with the Center for Hereditary Oncology of Bonn (ZeT) to offer interdisciplinary care and engage with self-help groups.[Know More]

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.[Know More]

United Kingdom

LU - Lancaster University

LU - Lancaster University

The Division of Health Research at Lancaster University specializes in postgraduate study and conducts high-quality health-related research. Its expertise enhances health, wellbeing, and safety for individuals, enriching the skills of professionals and individuals in various sectors contributing to improved service provision and care by preparing better-equipped professionals and policymakers.[Know More]

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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