People conducting clinical case studies
Work on clinical case studies is done by researchers from univeristies and industry together with patient organisations and HTA bodies.
Our patient and clinical research partners from the University of Newcastle upon Tyne, University of Birmingham, Istituto Tumori Bari, European Cancer Patients Coalition (ECPC),and Muscular Dystrophy UK (MDUK), play important roles by providing expertise on cancer, rheumatoid arthritis and neuromuscular disorders.
Ardine de Wit, public lead for case studies
Ardine de Wit is a specialist in Health Technology Assessment and health economics. She is an Associate Professor of HTA and head of the Department of HTA of the Julius Centre for Health Sciences and Primary Care (University Medical Centre Utrecht). Her research interests concern the economic evaluation of healthcare and prevention, as well as patient preferences. She has been involved in a large number of patient preference studies in the field of public health and healthcare. She is currently a member of the Scientific Advisory Council on reimbursement of medicines of the National Health Care Institute of the Netherlands.
Andrea Beyer, private lead for case studies
Andrea Beyer has a Master's degree in Public Health from Emory University and a PhD in Medical Sciences from University of Groningen. Andrea has worked in the field of Epidemiology, both in the US and in Europe, and was also a key member of the EMA Benefit-Risk Methodology project and led the IMI PROTECT-WP6 on the feasibility of extending benefit-risk methodologies to patients, healthcare professionals, and regulatory authorities. Her research areas of interest are measuring individual differences in risk attitude, risk perception, and benefit-risk trade-offs. Andrea Beyer is now a Senior Expert Statistician at Actelion Pharmaceuticals Ltd covering epidemiology/observational studies and patient centric study designs.
Jorien Veldwijk, public co-lead for case studies
Jorien Veldwijk is a postdoctoral researcher at Uppsala University’s Centre for Research Ethics & Bioethics (CRB). She is also a senior research fellow at the Erasmus Medical Center. Dr. Veldwijk’s research mainly covers measuring patients’ decision-making within a broad range of health care and public health topics as well as methodological issues. She is involved as a DCE expert in several studies in different organisations and countries, combining applied and methodological research which has resulted in publications in high-impact journals.
Leo Russo, private co-lead for case studies
Leo J. Russo, PhD is currently a Senior Director in Pfizer’s Worldwide Epidemiology Department. His academic training began in the field of statistics, in which he holds a Bachelor of Science degree from THE Ohio State University. Leo went on to complete his M.S. and PhD degrees in epidemiology at Case Western Reserve School of Medicine. Leo has been a practicing epidemiologist for over 20 years, of which the last 16 has been with the pharmaceutical industry. Leo is currently on the editorial board of the journal Therapeutic Advances in Drug Safety, and is a regular peer reviewer for the journal Pharmacoepidemiology and Drug Safety. He is a strong advocate for epidemiology and takes many opportunities to speak about the field and its power to advance health and drive innovation in the pharmaceutical industry. He is currently focusing on preparing Pfizer for a future of patient preference studies being an essential piece of a product’s benefit-risk profile.
Clinical case study leads
PREFER is planning three clinical patient preference case studies covering Rheumatoid Arthritis, Neuromuscular Disorders and Lung Cancer.
Karim Raza, lead for Rheumatoid Arthritis case study
Karim Raza is Professor of Clinical Rheumatology at the University of Birmingham and Honorary Consultant Rheumatologist and Director of Research and Development at Sandwell and West Birmingham Hospitals NHS Trust. His research focuses on early rheumatoid arthritis, addressing pathogenic mechanisms, biomarker development, strategies to enhance clinical outcomes for patients with a new onset of disease and patient perspectives on disease and treatment. Specifically Karim is interested in:  Mechanisms driving the molecular basis for the switch to disease persistence and the timing of this switch in early arthritis.  Predictors of outcome in patients with early inflammatory arthritis and patients’ perspectives on predictive testing and preventive treatments.  Management pathways for patients with early rheumatoid arthritis, including the development of strategies to facilitate rapid patient assessment. Karim is an active proponent of patient and public involvement in research and has coordinated the establishment of the Birmingham Rheumatology Patient Research Partnership
Axel Hueber, lead for Rheumatoid Arthritis case study
Axel Hueber is a research clinician and senior lecturer in the field of immunology and rheumatology and holds an MD and PhD in immunology. He focuses on cytokine biology in synovial inflammation, but also is involved and leads clinical trials transferring knowledge from bench to bedside and vice versa. With this he is strongly interested in patient communication and preferences in the field of rheumatology.
Cecilia Jimenez-Moreno, lead for neuromuscular disorders case study
Cecilia Jimenez-Moreno, Research Physiotherapist, PhD at Newcastle University leads the PREFER NMD case study together with Dr. Grainne Gorman. NMD represent rare, serious and debilitating conditions with a high unmet need for treatments. Two diseases will be included: myotonic dystrophy type 1 and mitochondrial disorders; both characterise as multi-systemic and heterogeneous diseases which can be present in more than one family member. Patient preference studies in this field are scare, however their potential impact as encouragers for industry or as supporting evidence for regulatory authorities seems high. This case study will allow an insight into the field of patient preference studies in rare diseases and into diseases that may present learning difficulties.
Angelo Paradiso, lead for lung cancer case study
Angelo Paradiso, Istituto Tumori of Bari, leads the PREFER lung cancer case study.
Patient representatives in clincial case studies work
The patient representation in the PREFER clincial case studies is led by Muscular Dystrophy UK (MDUK), together with the European Cancer Patients Coalition (ECPC).
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.
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).
Researchers who are doing the work
- Karin Schölin Bywall, Uppsala University
- Jennifer Viberg Johansson, Uppsala University
- Ulrik Kihlbom, Uppsala University
- Ardine de Wit, UMC Utrecht
- Ian Smith, UMC Utrecht
- Chiara Whichello, Erasmus University Rotterdam
- Maureen Rutten-van Mölken, Erasmus University Rotterdam
- Bas Donkers, Erasmus University Rotterdam
- Esther de Bekker-Grob, Erasmus University Rotterdam
- Jorien Veldwijk, 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
- Axel Hueber, University of Erlangen
- Matthias Englbrecht, University of Erlangen
- Gabriella Praveltoni, European Institute of Oncology
- Giulia Marton, European Institute of Oncology
- Laura Vergani, European Institute of Oncology
- Paolo Guiddi, European Institute of Oncology
- Luca Bailo, European Institute of Oncology
- Ketti Mazzocco, European Institute of Oncology
- Sarah Verschueren, MindBytes
- Angelo Paradiso, Istituto Tumori of Bari
- Enrica Capeletto, Istituto Tumori of Bari
- Isabelle Manneh-Vangramberen, European Cancer Patient Coalition
- Cecilia Jimenez Moreno, Newcastle University
- Philip Cammish, Newcastle University
- Elisabeth Wood, Newcastle University
- Grainne Gorman, Newcastle University
- Nikoletta Nikolenko, Newcastle University
- Irina Cleemput, Belgian Health Care Knowledge Centre
- Jenny Sharpe, Muscular Dystrophy UK
- Nigel Cook, Novartis
- Monika Borchert, Novartis
- Plamen Kozlovski, Novartis
- Kimberley Hockley, Amgen
- Susan Talbot, Amgen
- Meredith Smith, Amgen
- Gunnar Schroefel, Bayer
- Bahman Farahmand, Bayer
- Mariam Jamali, Bayer
- Pooja Merchant, Bayer
- Stephen Heaton, Bayer
- Antje Tockhorn, Eli Lilly
- Christine A Radawski, Eli Lilly
- Juan Wang, Eli Lilly
- Kristin Bullok, Eli Lilly
- Bennett Levitan, Janssen
- Eva Katz, Janssen
- Zhong Yuan, Janssen
- Rachael DiSantostefano, Janssen
- Stephanie Tcherny-Lessenot, Sanofi
- Juhaeri Juhaeri, Sanofi
- Vaishali Patadia, Sanofi
- Andrea Beyer, Actelion Pharmaceuticals
- Hilke Kracker, Actelion Pharmaceuticals
- Leo Russo, Pfizer
- Stephen Watt, Pfizer
- Cathy Anne Pinto, Merck, Sharpe & Dome
- Richard Hermann, AstraZeneca
- Heiko Götte, Merck KGaA
- Patricia Fleuranceau-Morel, Merck KGaA
- Tarek Hammad, Merck KGaA
- Georges Quartey, Roche
- Pravin Girase, Roche
- Marc van Dijk, Takeda
- Sarah Harding, Takeda