Esther de Bekker-Grob, Academic lead for methodology work

Esther de Bekker-Grob, public lead for methodology

Esther de Bekker-Grob, Associate Professor of Health Economics and Health Preferences at Erasmus University Rotterdam and Erasmus MC, and co-director of the interfaculty Erasmus Choice Modelling Centre. As a young academic, Dr. de Bekker-Grob has an impressive amount of peer-reviewed publications in high-quality journals, and for many of those she is the first author. Her research is closely linked to the theme of the proposed application. Quality and relevance of her research have been recognised inside and outside of academia, as she has already obtained about 2.5 million euro funding for her own line of research, including prestigious personal grants.

Juhaeri Juhaeri, Industry lead WP 2

Juhaeri Juhaeri, private lead for methodology

Juhaeri Juhaeri, PhD, is Vice President and Head of Global Safety Sciences at Sanofi. Juhaeri is an epidemiologist and statistician with over 20 year experience in epidemiologic research in academia and in the pharmaceutical industry. He joined Sanofi in 2001 where he built a Big Data system for epidemiologic research and signal detection. He was a member of the Steering Committee of the IMI PROTECT, a public-private project on Pharmacovigilance and Pharmacoepidemiology by a European Consortium. Juhaeri is also a member of the Scientific Advisory Committee of the IMEDS program, or Innovation in Medical Evidence Development and Surveillance, which was created under the Reagan-Udall Foundation to help advance the regulatory science needs of the FDA. Juhaeri is an Adjunct Faculty at the Gillings School of Global Public Health, University of North Carolina Chapel Hill, North Carolina. He received his PhD in Epidemiology from the same university.

Ulrik Kihlbom, Academic co-lead WP2

Ulrik Kihlbom, public co-lead for methodology

Ulrik Kihlbom is Associate Professor and Senior Lecturer in Medical Ethics at Uppsala University's Centre for Research Ethics & Bioethics (CRB). He is part of the Mind the Risk team and responsible for the course in Medical Ethics and Medical Law at the Uppsala University Medical School. He is also responsible for an advanced-level course on Public Health Ethics. His research has focused on the issue of how bioethics can be empirically informed and contextually relevant, both in theoretical projects as well as in clinically-oriented projects. The theoretical issues concern moral judgement and guidance, autonomy and informed consent, value and genetic risk. His more clinically-oriented projects includes work on participation in Phase 1 and 3 cancer clinical trials, risk information to acute myeloid leukaemia patients as well as the role of family members and close ones in health-care decisions.

Bennett Levitan, Industry lco-ead for methodology work

Bennett Levitan, private co-lead for methodology

Bennett Levitan, MD-PhD is Senior Director, Epidemiology, at Janssen R&D. He introduced state-of-the-art patient-focused benefit-risk assessment to Janssen and has led numerous teams in preparation of benefit-risk assessments for regulatory submissions and health authority meetings. Bennett has published widely on both theoretical and pragmatic aspects in this field. He co-led development of the PhRMA Benefit-Risk Action Team (BRAT) Framework for benefit-risk assessment and serves on several committees that inform policy on patient preference and benefit-risk methods.

Patient representatives in methodology work

The patient input in the methodology workstream is led by the International Alliance of Patients’ Organizations (IAPO) with representatives from the European Cancer Patients Coalition (ECPC), European Patients Forum (EPF) and Muscular Dystrophy UK (MDUK).

Antonio Ciaglia, IAPO contact person, PREFER patient advisory group

Antonio Ciaglia, IAPO

Antonio Ciaglia (IAPO) leads patient input to PREFER's  methodology work and also gives input to the project management. He carries out research activities and contributes toward the development of the IMI-GetReal Research Project. He brings formal qualitative and quantitative research expertise and has quickly developed knowledge and skills in health research and the drug/device development pathway. Before joining IAPO, Antonio undertook an AW Mellon Foundation-funded postdoctoral fellowship at the University of the Witwatersrand, Johannesburg, where he developed a research project in the field of comparative media policy and political communication. He also worked as a Policy and Research Intern at the Leicestershire-based Building and Social Housing Foundation, where he developed a research project on issues regarding high-rise housing policy in Britain and Europe. Antonio holds a PhD in Political Science from the Scuola Normale Superiore of Florence, an MA in Political Communication and a BA in Communication Studies from the University of Perugia.

Kathi Apostolidis, ECPC

Kathi Apostolidis, ECPC

Kathi Apostolidis (ECPC) provides input to PREFER methodology work. She is the Vice President of ECPC-European Cancer Patient Coalition and the President of the Executive Committee of ELL.O.K., the Hellenic Cancer Federation in Greece. Kathi Apostolidis is a Public Affairs Consultant with a very broad and diversified experience in regulatory and public affairs, diplomacy, strategy, marketing and communications with international companies and public service. Jointly with the President, she is responsible for strategy, strategic alliances, relations with the European Commission and other EU and national high level cancer stakeholders.

Francesco De Lorenzo,  ECPC

Francesco De Lorenzo, ECPC

Francesco De Lorenzo (ECPC) provides input on PREFER work on methodology, clinical case studies and the recommendations coming out of the project. Professor Francesco De Lorenzo is ECPC’s President and colon cancer survivor. He is medical doctor and professor of biochemistry from the University Federico II Naples. Furthermore, Prof. De Lorenzo has a rich experience in cancer advocacy being the co-founder, former Vice-President and Board member of ECPC. He is also the founder and President of the Italian Association of Cancer Patients (AIMaC), Italy's first Cancer Information Service (CIS), and of the Italian Federation of Cancer Patients Organisations (FAVO). Prof. De Lorenzo is very active in Italy's governmental network of cancer Institutes (ACC), Italy's National Cancer Plan Committee, and the National Volunteer Observatory of the Italian Welfare Ministry. He was previously engaged in Italian politics as a Member of Parliament, holding several ministerial mandates (Ministry of Health, 1989-1993).

Isabelle Manneh-Vangramberen, ECPC

Isabelle Manneh-Vangramberen, ECPC

Isabelle Manneh-Vangramberen leads patient input on PREFER management and communications and recommendations. She also provides input on methodology and . She is ECPC's Projects Coordinator and executive body for all EU funded projects. Isabelle Manneh-Vangramberen holds a Bachelor of Science in Pharmacy & Pharmaceutical Sciences, a Master degree in Public Health from Florida International University, in addition to, a post-Master in European Studies specialising in EU Policy & Project Management from the Catholic University of Louvain. Her professional experience ranges from community-based participatory research aiming at prevention in the area of Public Health, Global and Environmental Health, to EU Policy, Project Management and the provision of Humanitarian Aid in conflict and post-conflict settings under the United Nations, among many others covering the US, Europe, Middle East and Asia.

Valentina Strammielloas, EPF

Valentina Strammielloas (EPF) is part of the PREFER patient stakeholder advisory group.

Jenny Sharpe, MDUK

Jenny Sharpe, MDUK

Jenny Sharpe (MDUK) leads the patient input in the clinical case studies. She also gives input to PREFER communications, methodology and recommendations. Jenny is MDUK’s Research Communications Officer and is primarily responsible for translating research findings into a language that patients can understand. This involves engaging with a range of people, including scientists, industry representatives, clinicians, and individuals and families affected by neuromuscular conditions. Prior to joining MDUK, she completed a PhD in mitochondrial biology at University College London.

Researchers who are doing the work