People working on methodology
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, 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, 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, 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).
Ziede Burage, IAPO
Ziede Burage (IAPO) provides patient input to PREFER’s methodology and recommendations. She also contributes toward the IMI-GetReal Initiative project. Ziede is IAPO’s Policy Manager and is leading policy development and research activities to ensure patients' voice is better heard in health policy making at global and regional levels. Before joining IAPO, Ziede worked at several international health NGOs and, most recently, at Cancer Research UK on policy development and research grants management. Ziede holds a Master in Human Rights from the City University London.
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) 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 leads patient input on PREFER and has worked with patients and patient empowerment for the last decade. She is ECPC's Projects Coordinator / Manager and is currently the appointed executive body for all EU funded projects participating in several European Union's Research and Innovation framework programmes in addition to working on 3 principal EU Policy files: the European Cross Border Health Directive, the General Data Protection Regulation, and Health Technology Assessment. She holds a double Bachelor of Science in Pharmacy and Pharmaceutical Sciences, a Master degree in Public Health, in addition to a post-master in European Studies specialising in EU Policy & Project Management.
Valentina Strammielloas, EPF
Valentina Strammielloas (EPF) is part of the PREFER patient stakeholder advisory group.
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
- Karin Schölin Bywall, Uppsala University
- Mats G. Hansson, Uppsala University
- Ulrik Kihlbom, Uppsala University
- Ardine de Wit, UMC Utrecht
- Bas Donkers, Erasmus University Rotterdam
- Chiara Whichello, Erasmus University Rotterdam
- Esther de Bekker-Grob, Erasmus University Rotterdam
- Jorien Veldwijk, Erasmus University Rotterdam
- Maureen Rutten-van Mölken, Erasmus University Rotterdam
- Vikas Soekhai, Erasmus University Rotterdam
- Eline van Overbeeke, Katholieke Universiteit Leuven
- Isabelle Huys, Katholieke Universiteit Leuven
- Rosanne Janssens, Katholieke Universiteit Leuven
- Gwenda Simons, University of Birmingham
- Karim Raza, University of Birmingham
- Marie Falahee, University of Birmingham
- Larissa Valormendez, University of Erlangen
- Gabriella Praveltoni, European Institute of Oncology
- Giulia Marton, European Institute of Oncology
- Ketti Mazzocco, European Institute of Oncology
- Laura Vergani, European Institute of Oncology
- Paolo Guiddi, European Institute of Oncology
- Geert Vander Stichele, MindBytes
- Niki Verdonk, MindBytes
- Sarah Verschueren, MindBytes
- Francesco De Lorenzo, European Cancer Patient Coalition
- Kathi Apostolidis, European Cancer Patient Coalition
- Antonella Cardone, European Cancer Patient Coalition
- Max Schravendeel, European Cancer Patient Coalition
- Cecilia Jimenez Moreno, Newcastle University
- Irina Cleemput, Belgian Health Care Knowledge Centre
- Jenny Sharpe, Muscular Dystrophy UK
- Andreas Brueckner, Novartis
- Mireille Muller, Novartis
- Nigel Cook, Novartis
- Kimberley Hockley, Amgen
- Meredith Smith, Amgen
- Susan Talbot, Amgen
- Martin Gebel, Bayer
- Stephen Heaton, Bayer
- Antje Tockhorn, Eli Lilly
- Becky Noel, Eli Lilly
- Greg Anglin, Eli Lilly
- Bennett Levitan, Janssen
- Eva Katz, Janssen
- Filip Mussen, Janssen
- Jan van Laer, Janssen
- Rachael DiSantostefano, Janssen
- Zhong Yuan, Janssen
- Juhaeri Juhaeri, Sanofi
- Vaishali Patadia, Sanofi
- Andrea Beyer, Actelion Pharmaceuticals
- Berkeley Phillips, Pfizer
- Leo Russo, Pfizer
- Stephen Watt, Pfizer
- Cathy Anne Pinto, Merck, Sharpe & Dome
- Richard Hermann, AstraZeneca
- Jürgen Kuebler, CSL Behring
- Oliver Guenther, Merck KGaA
- Tarek Hammad, Merck KGaA
- Georges Quartey, Roche
- Emily Freeman, Abbvie
- Emma Du Four, Abbvie
- Esteban Herrero-Martinez, Abbvie
- Jerzy Tyczynski, Abbvie
- Sarah Harding, Takeda
- Ziede Burage, International Alliance of Patient Organisations