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.

The work is led by University Medical Centre Utrecht and Merck Sharp & Dohme together with Uppsala University and Pfizer.

Ardine de Wit, academic leader for case studies

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

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, Academic co-lead WP 3

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, industry leader for case studies

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, 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: [1] Mechanisms driving the molecular basis for the switch to disease persistence and the timing of this switch in early arthritis. [2] Predictors of outcome in patients with early inflammatory arthritis and patients’ perspectives on predictive testing and preventive treatments. [3] 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.

Cecilia Jimenez-Moreno, lead for neuromuscular disorders case study

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

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).

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.

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).

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
  • Georges Quartey, Roche
  • Dasha Cherepanov, Takeda
  • Sarah Harding, Takeda
  • Kawaldip Sehmi, International Alliance of Patient Organisations
  • Ziede Burage, International Alliance of Patient Organisations