People conducting clinical case studies
Work on clinical case studies is done by researchers from universities and industry together with patient organisations and HTA bodies. We have a large group of researchers contributing to PREFER case studies, supported by patient organisations.
Our case study portfolio is big, with three core clinical patient preference case studies. PREFER partners are also contributing data from patient preference studies they have conducted outside the framework of the project. In addition, our PhD students are running their own preference studies as part of their thesis work. Alongside, some of the pharmaceutical companies involved in the project are doing their own studies to explore PREFER research questions. Together, these eight contributions from our partners will contribute to robust and evidence-based recommendations! The work is led by University Medical Centre Utrecht and Merck Sharp & Dohme together with Uppsala University and Pfizer, but we consider this a group effort!
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.
Cathy Anne Pinto, private lead for case studies
Cathy Anne Pinto is a Sr. Pharmacoepidemiologist at Merck & Co., Inc., Kenilworth, New Jersey, U.S., with more than 25 years of research experience spanning clinical research and epidemiology. She has been involved in multidisciplinary research efforts both in the US and overseas and has held various positions in both the pharmaceutical and medical device industries. In her current position, she provides strategic epidemiologic support to clinical research, risk management and observational research teams, and contributes to the development of risk evaluation and mitigation strategies and risk management plans with a particular focus on benefit-risk decision-making processes. Cathy Anne earned her Doctoral Degree in Epidemiology from Rutgers/UMDNJ, Master of Science Degree in Chemical Engineering from Columbia University, and Bachelor of Science Degree in Biomedical Engineering from Boston University.
Jorien Veldwijk, public co-lead for case studies
Jorien Veldwijk is 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
Larissa Valor Méndez, lead for Rheumatoid Arthritis case study
Larissa Valor Méndez from the Rheumatology and Immunology Department, Friedrich-Alexander University Erlangen-Nürnberg leads the German leg of the PREFER Rheumatoid Arthritis case study, together with Prof. Georg Schett. Her research mainly covers autoimmunity and inflammation pathways with special focus in the understanding of therapeutic approaches in systemic chronic arthritis.
Grainne Gorman, lead for neuromuscular disorders case study
Grainne Gorman qualified from the Royal College of Surgeons in Ireland (RCSI), in 1997 and completed three years of general medical training in Dublin, Ireland. She became medical tutor for third and final medical year students at RCSI, for one year, prior to commencing her clinical training in neurology. After completing specialist training, Grainne Gorman moved to Newcastle to further her interest in neuromuscular diseases. She is a Senior Clinical Lecturer in the Institute of Translational and Clinical Research at Newcastle University and a Consultant Neurologist with the Newcastle Hospitals NHS Foundation Trust, with a particular interest in neuromuscular diseases. She is Director of the Wellcome Centre for Mitochondrial Research at Newcastle University as well as the Neuromuscular Theme Lead within the NIHR Newcastle Biomedical Research Centre.
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.
Serena Oliveri, lead for Lung Cancer case study
Serena Oliveri is a Psychotherapist and Researcher in psycho-oncology at the European Institute of Oncology (IEO), in Milan. She has a Phd in Psychology and has completed her Post-Doc at the Department of Oncology and Hemato-Oncology, University of Milan. She does research in medical decision making and patient empowerment. Her research interests mainly focus on patients’ preferences in cancer therapies, doctor-patient communication, psychological implication of genetic risk information, educational tools for health literacy and supportive care in cancer. She has been involved in a large number of national and international studies addressing patients’ support in cancer care. She has published more than 40 contributions in peer-reviewed journals.
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).
Antonella Cardone, ECPC
Antonella Cardone (ECPC) is the Director of the European Cancer Patient Coalition, the largest cancer patient umbrella organization in Europe with over 450 members from 48 countries. She has 25 years of experience working for non-profits in health, social and employment sectors. Prior to ECPC, Antonella Cardone was the Executive Director of the Fit for Work Global Alliance, a multi-stakeholder coalition championing change in health and work policy. She has previously served as the Director of the Global Smoke-free Partnership of the American Cancer Society, leading a movement of over 100 members to coordinate the development of smoke-free laws in 40 countries. She holds a Master’s in Science and one in Business Administration. She currently represents ECPC on the Board of Pancreatic Cancer Europe, in which she is vice-chair, and she is also Board Member of All.Can, an international multi-stakeholder not-for-profit organisation working to improve the efficiency of cancer care.
Charis Chirvalaki, ECPC
Charis Chirvalaki (ECPC) works to build bridges between policy and research project management, support the collaboration with research institutions, EU regulatory authorities, policymakers, industry and patient organizations and help the European Cancer Patient Coalition put cancer at the frontline of the European agenda. She has ten years of experience in European and International projects and has worked with a wide range of key players and stakeholders, including European and governmental institutions, academia, health services, local authorities. Charis Chirvalaki graduated from the Chemistry Department at University of Crete, Greece. She holds a Master’s degree in Public Health and Healthcare Management specialised in Epidemiology and a PhD from Medical School, University of Crete, Greece.
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
- Jennifer Viberg Johansson, Uppsala University
- Karin Schölin Bywall, Uppsala University
- Ulrik Kihlbom, Uppsala University
- Ardine de Wit, UMC Utrecht
- Ian Smith, 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
- Matthias Englbrecht, University of Erlangen
- Larissa Valormendez, University of Erlangen
- Dario Monzani, European Institute of Oncology
- Gabriella Praveltoni, European Institute of Oncology
- Giulia Marton, European Institute of Oncology
- Ketti Mazzocco, European Institute of Oncology
- Serena Oliveri, European Institute of Oncology
- Serena Petrocchi, European Institute of Oncology
- Ilaria Durosini, European Institute of Oncology
- Laura Vergani, European Institute of Oncology
- Luca Bailo, European Institute of Oncology
- Paolo Guiddi, European Institute of Oncology
- Geert Vander Stichele, MindBytes
- Niki Verdonk, MindBytes
- Evi Luyckx, MindBytes
- Sarah Verschueren, MindBytes
- Michelle Luypaert, MindBytes
- Antonella Cardone, European Cancer Patient Coalition
- Thomas Barlow, European Cancer Patient Coalition
- Max Schravendeel, European Cancer Patient Coalition
- Alasdair Blain, Newcastle University
- Albert Lim, Newcastle University
- Christine Dyer, Newcastle University
- Cecilia Jimenez Moreno, Newcastle University
- Grainne Gorman, Newcastle University
- Julie Murphy, Newcastle University
- Lyndsey Butterworth, Newcastle University
- Robert McFarland, Newcastle University
- Irina Cleemput, Belgian Health Care Knowledge Centre
- Elizabeth Owen, Muscular Dystrophy UK
- Monika Borchert, Novartis
- Nigel Cook, Novartis
- Plamen Kozlovski, Novartis
- Sheila Dickinson, Novartis
- Susan Talbot, Amgen
- Agnes Pulvermüller, Bayer
- Bahman Farahmand, Bayer
- Gunnar Brobert, Bayer
- Gunnar Schroefel, Bayer
- Inge Lise Nielsen, Bayer
- Martin Gebel, Bayer
- Stephen Heaton, Bayer
- Pooja Merchant, Bayer
- Antje Tockhorn, Eli Lilly
- Christine A Radawski, Eli Lilly
- Juan Wang, Eli Lilly
- Kristin Bullok, Eli Lilly
- Bennett Levitan, Janssen
- Eva Katz, Janssen
- Jan van Laer, Janssen
- Rachael DiSantostefano, Janssen
- Zhong Yuan, Janssen
- Tarek Hammad, Sanofi
- Juhaeri Juhaeri, Sanofi
- Stephanie Tcherny-Lessenot, Sanofi
- Vaishali Patadia, Sanofi
- Emily Freeman , Sanofi
- Hilke Kracker, Actelion Pharmaceuticals
- Leo Russo, Pfizer
- Stephen Watt, Pfizer
- Cathy Anne Pinto, Merck, Sharpe & Dome
- Emuella Flood, AstraZeneca
- Daniel Eek, AstraZeneca
- Heiko Götte, Merck KGaA
- Patricia Fleuranceau-Morel, Merck KGaA
- George Quartey, Roche
- Dasha Cherepanov, Takeda
- Sarah Harding, Takeda
- Kawaldip Sehmi, International Alliance of Patient Organisations
- Ziede Burage, International Alliance of Patient Organisations