The Research Team
We have set up a European-wide network of professionals, researchers and patient advocacy organisations. The research team consists of social scientists, representatives from European patient advocacy organisations and pulmonary fibrosis experts.
All involved partners share the vision and mission to improve the quality of life and care of patients living with pulmonary fibrosis.
Below we provide an overview of all involved partners.
KU Leuven- Belgium
Prof. Dr. Fabienne Dobbels is the project investigator of the COCOS-IPF project. She is a psychologist, psychotherapist and full-time Professor at the Academic Center for Nursing and Midwifery (KU Leuven, Belgium). Her research focuses on medication adherence, self-management and patient-reported outcomes, mainly in post-transplant patients, but also in other chronic patient populations. The core outcome set fits very well with her expertise on patient-reported outcomes. Over the last years, Prof. Dobbels has also built expertise on engaging patients and other stakeholders in all steps of the research planned. Prof. Dobbels was a PI or co-PI of several research projects, and was a consortium partner on a number of European projects (e.g. the Pro-active IMI project, EULOD, and ABC-project).
Prof. Dr. Fabienne Dobbels
Prof. Dr. Wim Wuyts is Professor at the KU Leuven (Faculty of Medicine) and head of the “interstitial lung disease unit” at the University Hospitals Leuven (UZ Leuven), Belgium. He is also a senior researcher at the ILD unit in the Laboratory of Respiratory Diseases and Thoracic Surgery at the KU Leuven. He is principal investigator of several clinical studies in the field of interstitial lung diseases, pulmonary arterial hypertension and asthma. He participated in the landmark clinical studies phase I, II and III in the field of IPF and sarcoidosis in Europe. He is conducting research on epidemiological data and therapy adherence, as well as on best ways to manage patients and to help them maintaining a high health-related quality of life. He is the co-founder of the Belgian patient advocacy group.
Prof. Dr. Wim Wuyts
Dr. Anouk Delameillieure obtained a master's degree in clinical Biomedical Sciences in 2017. She continued her education with a PhD, which she obtained in March 2022 under the supervision of Prof Wim Wuyts and Prof Fabienne Dobbels. The title of her PhD thesis is 'Rethinking IPF care - Charting the course to person-centred integrated care for idiopathic pulmonary fibrosis together with patients and healthcare professionals'.
Anouk is currently working as a postdoctoral researcher at KU Leuven. She is particularly interested in person-centred care, patient and public involvement, integrated care and value-based healthcare.
Dr. Anouk Delameillieure
Dr. Liesbet Van Bulck is a postdoctoral researcher at the Academic Center of Nursing and Midwifery at KU Leuven.
She obtained a Bachelor degree in Nursing in 2014 and a Master degree in Nursing in 2016. In 2023, she gained her PhD entitled "Healthcare use in adults with congenital heart disease: examining illness identity, healthcare system factors and the end of life". She is interested in patient-reported outcomes, healthcare utilization, and palliative care needs of patients with chronic diseases. Before her involvement in the COCOS-IPF project, she mainly worked on research projects in cardiology.
Dr. Liesbet Van Bulck
Dr. Sofie Breuls graduated as a physiotherapist in 2018 and started working in a rehabilitation centre, providing physiotherapy to patients with respiratory and cardiac diseases.
Driven by her passion to improve patient care, she completed her PhD at KU Leuven in 2024, focusing on 'Physical activity and coaching in patients with chronic respiratory diseases'. During her PhD, she actively worked with patients with interstitial lung disease and after lung transplantation.
Dr. Sofie Breuls
European Pulmonary Fibrosis Federation
The European Pulmonary Fibrosis Federation (EU-PFF) was founded in 2016, and is a non-profit patient advocacy organization uniting 19 European national patient associations.
They advocate for equal access to treatment and care for all patients with pulmonary fibrosis, regardless of geography, socio-economic status or age. EU-PFF also aims to raise awareness, provide disease education, improve care and support research on IPF and PPF.
EU-PFF is represented by Mr. Steve Jones (President) and Mr. Liam Galvin (Chief Executive Officer). The COCOS-IPF project perfectly fits with the mission of the organization to improve care for all patients with pulmonary fibrosis, irrespective of geographical location, demographic or clinical characteristics or socio-economic status. Patient representatives of EU-PFF will be involved in all stages of the research planned, from protocol development, to supporting the conduct of the studies planned, to interpretation of the results, and finally, dissemination of the findings to researchers, patients and the public.
European Lung Foundation
The European Lung Foundation (ELF) is a patient-led organization that works internationally to bring patients, the public and healthcare professionals together to improve lung health and advance diagnosis, treatment and care. ELF has a strong network of patient organizations and a number of patient advisory groups (including one on pulmonary fibrosis). ELF works in partnership with the European Respiratory Society (ERS) and plays an important role in communicating respiratory sciences to those outside the respiratory field. They also aim to ensure that people with lung diseases and the public have the opportunity to influence respiratory research and guidelines at the European level. ELF also has an educational training program for patients to train them on how to be more actively involved in healthcare. Furthermore, ELF is involved in multiple EU projects, and runs it's own campaign Healthy Lungs for Life. Dr. Pippa Powell, Ms. Jeanette Boyd, Ms. Polina Starchencko, Ms. Sheila Garcia and Ms. Natalia Liagka represent ELF and ERS in the COCOS-IPF project.
University Medical Center Mainz- Germany
Prof. Dr. Michael Kreuter
Prof. Dr. Michael Kreuter is head of the Centre for interstitial and rare lung diseases and head of the interdisciplinary sarcoidosis centre. He is also member of the steering committee of clinical phase II and III trials and a local PI of more than 10 clinical trials on interstitial lung diseases including IPF. Since 2013, Prof. Kreuter is also the scientific head and organizer of the European Respiratory Society (ERS) schools on ILD as well as the scientific head and organizer of the annual German Symposia on ‘Rare lung disease in focus’. He is also member of the European Reference Network for rare diseases as deputy chair of ERN-ILD and ERN-LUNG education. Prof. Kreuter is the chief medical advisor of the German patient support group ‘Lungenfibrose e.V.’ He received the 2015 Science Award Lungenfibrose, the 2017 lungfibrosis Teaching award, and the 2020 Scientific award of Rosemarie-Germscheid-Stiftung (Deutsche Rheuma Liga). He has a keen interest in clinical and patient-reported outcomes in research and clinical care, values working with patient advocacy groups, and has an extensive professional network.
Dr. Vivien Somogyi
Dr. Vivien Somogyi is a physician in the 4th year of residency training in pneumology and respiratory medicine at the Thoraxklinik Heidelberg (Germany). She is a member of the European Respiratory Society (ERS), German Society of Pneumology and Respiratory Medicine (DGP) and German Center for Lung Research (DZL). She has been active in pulmonology research since the 2nd year of the medical studies at Semmelweis University in Budapest (Hungary) including presentation of scientific posters and lectures in several medical conferences. Currently she focuses on the disease group of interstitial lung diseases (ILD), in this field she has actively contributed to multiple clinical researches with special focus on the comorbidities in ILD. In 2019, her first review appeared on the therapeutic options in idiopathic pulmonary fibrosis (IPF) (Somogyi V, Chaudhuri N, Torrisi SE, Kahn N, Müller V, Kreuter M. The therapy of Idiopathic Pulmonary Fibrosis: what's next? Eur Respir Rev. 2019; 28(153):190021.).
Ege University- Turkiye
Prof. Nesrin Moğulkoç is a Professor of Chest Medicine at the Ege University Hospital, Bornova, Izmir in Turkiye and is the head of the centre for ILD. Over 2000 patients with interstitial lung disease have been managed at the centre by a multidisciplinary team. Her main domain of interests are interstitial lung diseases including idiopathic pulmonary fibrosis, sarcoidosis and pulmonary hypertension. Prof. Moğulkoç is member of the steering committees of the Turkish national registry for UIP and the EMPIRE registry for IPF. Also, she participates in a number of phase II and III clinical trials. She has intensive knowledge and experience in using clinical outcomes in research, registries and clinical practice. She also has a large professional network in Central Eastern Europe, particularly through her involvement in the EMPIRE registry.
Prof. Dr. Nesrin Mogulkoç
Dr. Nur Töreyin is a physician in respiratory medicine and occupational medicine. Her main research interests lies in work-related lung diseases, emphasizing quantitative epidemiological methods on exposure assessment of workplace hazards. She was involved in several observational clinical types of research and actively participated in multidisciplinary board meetings of ILD during her residency training at the Department of Chest Diseases (Ege University). She then followed a fellowship in occupational medicine at the Department of Public Health (Ege University). In 2019, she worked as a researcher in occupational epidemiology at KU Leuven Centre for Environment and Health (CEH) under the supervision of Prof Dr. Lode Godderis. She has clinical experience in pneumoconiosis caused by a broad spectrum of airborne inorganic dust, fibers, and hypersensitivity pneumonia. She was awarded the European Diploma in Adult Respiratory Medicine in 2015.
Eda Şen is a psychologist who is specializing in the field of drug addiction in her master’s degree. She focused on pregabalin addiction in her thesis. She is a cognitive behavioral therapist and continues her work in this field. She joined the Prof. Moğulkoç’s team in 2022 to work on the COCOS-IPF project. She also works as a mixed method research analyst and provides training in this field.
Dr. Zehra Nur Töreyin
Eda Şen
Psychologische Hochschule Berlin- Germany
Prof. Dr. Nikola Stenzel
Prof. Dr. Nikola Stenzel is a professor at the Psychologische Hochschule in Berlin and supervisor of the postgraduate psychotherapy training. She is also involved in clinical assessments and is a cognitive behavioral therapist. She has expertise in the analysis of behavioral medicine and in psychotherapy research (i.e. multi-level analyses). Her research also focuses on the development, evaluation and implementation of methods to assess psychological factors that affect quality of life and rehabilitation outcomes in chronic respiratory diseases, as well as on the development of interventions for anxiety and depression. She developed a treatment manual for anxiety and depression in COPD-patients. Her expertise on patient-reported outcomes in patients with serious lung disease will be of benefit to the COCOS-IPF proposal.
Silja Schenk
M.Sc. Silja Schenk is a psychologist who is currently in her third year of postgraduate training as a psychotherapist. She works in clinical practice at the outpatient care unit of the Psychologische Hochschule Berlin (PHB) and joined the university’s research team in 2022 to work on the COCOS-IPF project, as a research assistant to Prof. Dr. Nikola Stenzel.
Prior to that she participated in other research projects, among others in the area of implementation of E-Mental-Health strategies (internet-based cognitive behavioral therapy) and on Quality of Life in cancer patients. Before starting her academic career in psychology, she graduated in music education and gained years of experience working in the field of performing arts and as a voice teacher.
Collaborators
The European Respiratory Society (ERS) is one of the leading professional organizations, uniting physicians, healthcare professionals, scientists and other professionals working in the respiratory field from over 160 countries. ERS aims to promote scientific research and provides access to high-quality education. The third pillar of ERS’s mission is advocacy in order to promote lung health, alleviate suffering from disease and drive standards for respiratory medicine across the globe. ERS consists of 14 Assemblies, of which Assembly 12 units experts on interstitial lung diseases, including IPF.
Ms. Thomy Tonia and Ms. Valerie Vaccaro will represent ERS within the COCOS-IPF consortium and will join the Steering Committee as collaborators.
Dr. Sabrina Bajwah is a consultant and honorary senior lecturer in the department of palliative care, policy and rehabilitation at King’s College London. Her research interest include respiratory palliative care, different models of palliative care (specifically those that cross care settings), and diversity and inclusion in research and clinical practice. Dr. Bajwah has experience in developing complex interventions for patients with end stage interstitial lung disease (including IPF) and also focuses on understanding patients’ needs for support and how to measure these. She co-developed the K-BILD, a self-report measure to capture ILD patients’ quality of life. Dr. Bajwah concurs with the project team in that developing a COS for IPF is timely and highly relevant for clinical care. She will share her expertise with the consortium on how to make sure patients with diverse backgrounds will engage in the research planned. Her knowledge on ethics in care will also help to conduct the project according to the highest ethical research standards.
Prof. Dr. Allison Tong is a Professor at the Sydney School of Public Health (University of Sydney, Australia). Prof. Tong received a Robinson Fellowship and the Australian National Health and Medical Research Council Investigator Award. Her field of expertise includes patient-centered outcomes research in chronic diseases. She has a particular interest in involving patients in research and has already involved patients specifically in setting research priorities, in the development of core outcomes and in the co-production of clinical trials. She has expertise in developing a Core Outcome Set (COS) as she co-founded the successful global Standardized Outcomes in Nephrology (SONG) initiative. Prof. Tong’s extensive experience and expertise in social research methods, including qualitative research, is of particular relevance for the COCOS-IPF project.
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