Governance Structure

Steering Committee

Joan Brunet

Work Package Leader 1

ICO – Intitut Català d’Oncologia
Spain

Joan Brunet is a medical oncologist with a conviction that genetics is the best way to prevent cancer. His research is focused on the clinical translation of multi-gene panel testing for hereditary cancer. He is also involved in many projects related to Hereditary Breast and Ovarian Cancer and Lynch syndrome, such as the role of microbiota and the development of a genetic screening test for gynaecological cancer.
In the PREVENTABLE project, he is leading the work package 1 “responsible in the establishment and validation of parallel and condition-specific care pathway per RTRS” and the principal investigator for Birt-Hogg Dubé Syndrome (BHDS).

Carla Oliveira

Work Package Leader 2

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Carla Oliveira is a group leader at i3S – Instituto de Investigação e Inovação em Saúde, Univ. Porto and the coordinating scientist of PREVENTABLE. She is internationally recognized for her work in E-cadherin/CDH1-related diseases and hereditary diffuse gastric cancer (HDGC), and for disclosing novel germline causes and somatic events in tumours, with impact for patient management and therapy. Her main scientific aims are to disclose the missing heritability in hereditary gastrointestinal cancer and actionable genotype-phenotype relationships in these diseases. The social and economic impact of hereditary cancer is a transversal aspect in her research and she privileges the interaction with patient’s associations.

Céu Mateus

Work Package Leader 3

LU – Lancaster University
United Kingdom

Céu Mateus is a Professor of Health Economics in the Division of Health Research at Lancaster University.  She has over 25 years of experience in research and has developed her expertise around economic evaluation of health technologies and interventions, efficiency measurement, equity and quality of life. She has been involved in several scientific associations in the field of health care such as PCSI, EuHEA and the Portuguese Chapter of ISPOR. She is responsible in creating the model costs and outcomes for RTRS patients. 

Marta Marques

Work Package Leader 4

UNL – Universidade Nova de Lisboa
Portugal

Marta Marques is a Senior Researcher at the Comprehensive Health Research Centre, NOVA Medical School.
She is a member of the Portuguese Behavioral Science COVID-19 Task Force, and of the Executive Committee of the European Health Psychology Society. Her research focuses on applying health behaviour change theories to develop and evaluate complex digital interventions targeting a range of health behaviours (e.g. physical activity),
and in advancing the methods for the development of the science of behaviour change.
She is applying her expertise in this project to conduct behavioural analysis of the uptake of care pathways for RTRS

Laurène Mathey

Work Package Leader 5

EHMA – European Health Management Association
Belgium

Laurène works as Director of Projects at European Health Management Association, where she manages European funded projects and the participation of the association in a dozen of projects. For PREVENTABLE, she supervises the leading of the Work-package 5, Making Rare Tumour Risk Syndromes (RTRS) visible.

Laurène has more than a decade experience in large European projects and communication, in the socio-medical field, as well as in social sciences and the health sector. She previously managed one of the European Reference Network and was European Affairs Manager of the Hospices Civils de Lyon, France.

Igor Lopes

Work Package Leader 6

SPI – Sociedade Portuguesa de Inovação
Portugal

Igor Lopes is a senior consultant at Sociedade Portuguesa de Inovação (SPI) with experience in science communication and public outreach. With degrees in biological and agricultural engineering (B.S, M.S. and PhD). With experiences in Brazil, the United States, Australia, Portugal and the EU, Igor has conducted research related to environmental impact and alternative energy from animal and agricultural production, acted as the statistical design and analysis expert in animal behaviour and drug addiction studies, and worked with communication, public outreach and stakeholder engagement for European projects in the area of research integrity, health, biotechnology, academic excellence, and animal welfare.

Management Team

Carla Oliveira

Project Coordinator

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Carla Oliveira is a group leader at i3S – Instituto de Investigação e Inovação em Saúde, Univ. Porto and the coordinating scientist of PREVENTABLE. She is internationally recognized for her work in E-cadherin/CDH1-related diseases and hereditary diffuse gastric cancer (HDGC), and for disclosing novel germline causes and somatic events in tumours, with impact for patient management and therapy. Her main scientific aims are to disclose the missing heritability in hereditary gastrointestinal cancer and actionable genotype-phenotype relationships in these diseases. The social and economic impact of hereditary cancer is a transversal aspect in her research and she privileges the interaction with patient’s associations.

Sara Pereira

Project Manager

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Sara Pereira is the project manager of PREVENTABLE at i3S – Instituto de Investigação e Inovação em Saúde, Univ. Porto. As a former life sciences researcher with a strong background in microbial biotechnology applied to health, she is skilled at overseeing all aspects of research projects, including its design, writing, implementation and teams’ leadership, being familiarized with the requirements and best-practices of research projects management. She is committed to advancing the knowledge and making an impact in the field of health sciences by supporting the research activities and fostering synergy among the different partners and stakeholders of PREVENTABLE.

Liliana Sousa

Coordination Team

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Liliana Sousa is a Ph.D. student in Business Administration, at the University of Minho – School of Economics and Management, with a focus on research engagement among health professionals. She has experience supporting and managing various projects related to health sciences. This includes activities such as coordinating research initiatives, working with health professionals to enhance their engagement in research, and contributing to the overall management of projects within the health sciences domain. Her academic pursuit and practical experience indicate a commitment to bridging the gap between business administration and the critical field of health sciences.

Clinical Teams

Carla Oliveira

Principal Investigator on Clinical Hereditary Diffuse Gastric Cancer (HDGC)

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Carla Oliveira is a group leader at i3S – Instituto de Investigação e Inovação em Saúde, Univ. Porto and the coordinating scientist of PREVENTABLE. She is internationally recognized for her work in E-cadherin/CDH1-related diseases and hereditary diffuse gastric cancer (HDGC), and for disclosing novel germline causes and somatic events in tumours, with impact for patient management and therapy. Her main scientific aims are to disclose the missing heritability in hereditary gastrointestinal cancer and actionable genotype-phenotype relationships in these diseases. The social and economic impact of hereditary cancer is a transversal aspect in her research and she privileges the interaction with patient’s associations.

Ana Azevedo

Principal Investigator for Hereditary Diffuse Gastric Cancer (HDGC) & Gastrointestinal Stromal Tumour syndrome (GIST)

Centro Hospitalar de São João
Portugal

Ana Azevedo is a director of Hospital Epidemiology Center, Centro Hospitalar São João.
Since 2007, she has been a specialist in Internal Medicine, also serving as a researcher at the Institute of Public Health of the University of Porto since 2006.
She has been an Associate Professor of Clinical Epidemiology at the Faculty of Medicine of the University of Porto since 2007.
She is part of the Associated Laboratory ITR, specifically the lab focused on “Individual and system factors for obtaining high-value healthcare.”
Her research ares fall into Clinical epidemiology and outcome research, hospital epidemiology, clinical quality, patient safety, and cardiovascular epidemiology.
She holds a role as a pricipal investigator for Hereditary Diffuse Gastric Cancer (HDGC) & Gastrointestinal Stromal Tumour syndrome (GIST) in the PREVENTABLE project.

Paula Soares

Principal Investigator for Gastrointestinal Stromal Tumour syndrome (GIST)

i3S – Instituto de Investigação e Inovação em Saúde
Portugal

Paula Soares, BSc, MSc, PhD, is Associated Professor of Biopathology at the Medical Faculty of the University of Porto and coordinates the Group of Cancer Signaling and Metabolism at the I3S/IPATIMUP. Paula Soares research interests include oncobiology of endocrine and neuroendocrine tumors, with special emphasis on genetic changes in cell signaling molecules and cell immortalization mechanisms.

Joan Brunet

Principal Investigator for Birt-Hogg Dubé Syndrome (BHDS)

ICO – Intitut Català d’Oncologia
Spain

Joan Brunet is a medical oncologist with a conviction that genetics is the best way to prevent cancer. His research is focused on the clinical translation of multi-gene panel testing for hereditary cancer. He is also involved in many projects related to Hereditary Breast and Ovarian Cancer and Lynch syndrome, such as the role of microbiota and the development of a genetic screening test for gynaecological cancer.
In the PREVENTABLE project, he is leading the work package 1 “responsible in the establishment and validation of parallel and condition-specific care pathway per RTRS” and the principal investigator for Birt-Hogg Dubé Syndrome (BHDS).

Judith Balmaña

Principal Investigator for Hereditary Leiomyomatosis and Renal Cell Carcinomas (HLRCC)

VHIO – Vall d’Hebron Institute of Oncology
Spain

Judith Balmaña is a medical oncologist whose area of research expertise focus on identification and clinical management of individuals with a hereditary susceptibility to cancer, as well as targeted therapeutic options for individuals with a germline alteration leading to homologous recombination deficiency. In the PREVENTABLE project she is the principal investigator of the Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) syndrome

Claude Houdayer

Principal Investigator for Li-Fraumeni Syndrome (LFS)

CHU Rouen – Centre Hospitalier Universitaire de Rouen
France

Claude Houdayer is a human geneticist involved in the diagnosis of RTRS, teaching and training. His translational research area includes genomic variant interpretation, functional testing and missing heritability fighting, genotype/phenotype correlations in oncogenetics, development and implementation of new strategies for mutational screening, splice defects and their in silico prediction.

Jean-Christophe Thery

Principal Investigator for Li-Fraumeni Syndrome (LFS)

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

Jean-Christophe Thery is an oncologist involved in the treatment of Breast, HNSCC and Sarcoma tumors. He also works at CHU in the oncogenetic clinic for HBOC and LFS syndroms. His research area inside the 1245 Inserm Unit focuses on the molecular diagnosis of hereditary cancers.

Janneke Schuurs-hoeijmakers

Principal Investigator for PTEN Hamartoma Tumour Syndrome (PHTS)

Radboud – Stichting Radboud Universitair Medisch Centrum
The Netherlands

Information will be available soon

Hildegunn Vetti

Principal Investigator for Familial Malignant Melanoma (FMM)

HUH – Helse Bergen HF
Norway

Hildegunn Høberg Vetti is a clinical geneticist whose clinical and research focus is on improving identification and care of patients and families with genetic tumour risk syndromes. In the PREVENTABLE project she is the principal investigator of Familial Malignant Melanoma (FMM).

Prof. Dr. Stefan Aretz

Principal Investigator for Peutz-Jeghers Syndrome (PJS)

UKB – Universitätsklinikum Bonn
Germany

Prof. Dr. Stefan Aretz is a the head of the research group HTS at the Institute of Human Genetics. He is working in the field of hereditary tumor syndromes (HTS) for almost 20 years with a broad experience in genetic counseling and differential diagnostics, molecular genetic diagnostics, and various research studies.
His special interest is to improve the identification and appropriate care of families affected by a genetic tumor predisposition.
His long-term research interest focuses on familial and hereditary colorectal cancer, in particular Lynch syndrome and gastrointestinal polyposes through (i) clinical descriptions, (ii) improvement of molecular genetic diagnostics; (iii) uncovering the genetic causes by identification of cryptic mutations in established genes and novel causative genes; (iv) the characterization of unclear genetic variants; and (v) evaluation and improvement of surveillance and preventive strategies

Economic Evaluation Team

Céu Mateus

Leader of the Economic evaluation team

LU – Lancaster University
United Kingdom

Céu Mateus is a Professor of Health Economics in the Division of Health Research at Lancaster University.  She has over 25 years of experience in research and has developed her expertise around economic evaluation of health technologies and interventions, efficiency measurement, equity and quality of life. She has been involved in several scientific associations in the field of health care such as PCSI, EuHEA and the Portuguese Chapter of ISPOR. She is responsible in creating the model costs and outcomes for RTRS patients. 

Judite Gonçalves

Member of the Economic evaluation team

UNL – Universidade Nova de Lisboa
Portugal

Judite Gonçalves is a Health Economist working on the Economic evaluation team of the project. She coordinates a small team based at NOVA School of Business & Economics contributing to the modelling of costs and outcomes for RTRS patients.

Social Sciences Team

Marta Marques

Leader of the Social science team

UNL – Universidade Nova de Lisboa
Portugal

Marta Marques is a Senior Researcher at the Comprehensive Health Research Centre, NOVA Medical School.
She is a member of the Portuguese Behavioral Science COVID-19 Task Force, and of the Executive Committee of the European Health Psychology Society. Her research focuses on applying health behaviour change theories to develop and evaluate complex digital interventions targeting a range of health behaviours (e.g. physical activity),
and in advancing the methods for the development of the science of behaviour change.
She is applying her expertise in this project to conduct behavioural analysis of the uptake of care pathways for RTRS

Outreach Team

Rebecca-Evelyn Papp

Stakeholder Engagement and Communication

EHMA – European Health Management Association
Belgium

As a Policy Officer at EHMA, the focus is on engaging with and influencing health policies, particularly in the context of Work Package 5 – “Making Rare Tumour Risk Syndromes (RTRS) Visible.” Responsibilities include policy analysis, advocacy, and strategic planning to address challenges related to rare tumour risk syndromes. This role involves collaborating with stakeholders, contributing to the development of effective policies, and ensuring the visibility of these syndromes in healthcare initiatives.

Septian Sigit Setiawan

Communication, Exploitation, and Dissemination

SPI – Sociedade Portuguesa de Inovação
Portugal

Septian Setiawan is an International Consultant with 5+ years of experience in engineering, education, and management consultancy, working on several Horizon Europe projects. One of them is the PREVENTABLE project where he is in charge of managing the dissemination and communication channels, developing and improving exploitation strategy, and creating innovation to expand the target outreach of the projects.

Nuno Teixeira Marcos

Outreach materials for RTRS-related knowledge

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

Nuno Teixeira Marcos heads the Cancer Prevention Unit of Ipatimup, a group at the interface of science, education and multimedia , dedicated to the production and dissemination of educational contents on cancer prevention. Holds a PhD in Human Biology from the Faculty of Medicine of the Univ. of Porto, was Assistant Professor at the University of Aveiro, has published 13 scientific articles and made dozens of communications at conferences. Combines his career as a researcher in oncobiology with pedagogical experience, and with the audiovisual expertise to produce educational materials about RTRS in the ‘Preventable’ project