G E Boeckxstaens1, V Drug2, D Dumitrascu3, A D Farmer4,5, J Hammer6, T Hausken7, B Niesler8, D Pohl9, L Pojskic10, A Polster11, M Simren11,12, M Goebel-Stengel13, L Van Oudenhove1, M Vassallo14, K-A Wensaas15, Q Aziz4, L A Houghton16,17,18. 1. Translational Research Center for Gastrointestinal Disorders, KULeuven & Department of Gastroenterology and Hepatology, University Hospital Leuven, Leuven, Belgium. 2. Gastroenterology Department, University Hospital "St Spiridon", Gr. T.Popa University of Medicine and Pharmacy, Iasi, Romania. 3. 2nd Medical Dept., Iuliu Hatieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania. 4. Wingate Institute of Neurogastroenterology, Barts and The London School of Medicine and Dentistry, London, UK. 5. Department of Gastroenterology, University Hospitals of North Midlands, Stoke on Trent, UK. 6. Medizinische Universität Wien, Universitätsklinik für Innere Medizin 3, Vienna, Austria. 7. Department of Medicine, Unit of Gastroenterology, Haukeland University Hospital, Bergen, Norway. 8. Department of Human Molecular Genetics, University of Heidelberg, Heidelberg, Germany. 9. Division of Gastroenterology and Hepatology, University Hospital Zurich, Zurich, Switzerland. 10. Institute for Genetic Engineering and Biotechnology, University of Sarajevo, Sarajevo, Bosnia and Herzegovina. 11. Department of Internal Medicine and Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. 12. Center for Functional Gastrointestinal and Motility Disorders, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 13. Department of Internal Medicine, Martin-Luther-Krankenhaus, Berlin, Germany. 14. Department of Medicine, Mater Dei Hospital, Tal-Qroqq, Malta. 15. Uni Research Health, Research Unit for General Practice, Bergen, Norway. 16. Leeds Institute of Biomedical and Clinical Sciences, University of Leeds and Leeds Gastroenterology Institute, Leeds Teaching Hospitals Trust, Leeds, UK. 17. Centre for Gastrointestinal Sciences, University of Manchester, Manchester, UK. 18. Division of Gastroenterology and Hepatology, Mayo Clinic, Jacksonville, FL, USA.
Abstract
BACKGROUND: Irritable bowel syndrome (IBS) is a complex condition with multiple factors contributing to its aetiology and pathophysiology. Aetiologically these include genetics, life-time events and environment, and physiologically, changes in motility, central processing, visceral sensitivity, immunity, epithelial permeability and gastrointestinal microflora. Such complexity means there is currently no specific reliable biomarker for IBS, and thus IBS continues to be diagnosed and classified according to symptom based criteria, the Rome Criteria. Carefully phenotyping and characterisation of a 'large' pool of IBS patients across Europe and even the world however, might help identify sub-populations with accuracy and consistency. This will not only aid future research but improve tailoring of treatment and health care of IBS patients. PURPOSE: The aim of this position paper is to discuss the requirements necessary to standardize the process of selecting and phenotyping IBS patients and how to organise the collection and storage of patient information/samples in such a large multi-centre pan European/global study. We include information on general demographics, gastrointestinal symptom assessment, psychological factors, quality of life, physiological evaluation, genetic/epigenetic and microbiota analysis, biopsy/blood sampling, together with discussion on the organisational, ethical and language issues associated with implementing such a study. The proposed approach and documents selected to be used in such a study was the result of a thoughtful and thorough four-year dialogue amongst experts associated with the European COST action BM1106 GENIEUR (www.GENIEUR.eu).
BACKGROUND: Irritable bowel syndrome (IBS) is a complex condition with multiple factors contributing to its aetiology and pathophysiology. Aetiologically these include genetics, life-time events and environment, and physiologically, changes in motility, central processing, visceral sensitivity, immunity, epithelial permeability and gastrointestinal microflora. Such complexity means there is currently no specific reliable biomarker for IBS, and thus IBS continues to be diagnosed and classified according to symptom based criteria, the Rome Criteria. Carefully phenotyping and characterisation of a 'large' pool of IBS patients across Europe and even the world however, might help identify sub-populations with accuracy and consistency. This will not only aid future research but improve tailoring of treatment and health care of IBS patients. PURPOSE: The aim of this position paper is to discuss the requirements necessary to standardize the process of selecting and phenotyping IBS patients and how to organise the collection and storage of patient information/samples in such a large multi-centre pan European/global study. We include information on general demographics, gastrointestinal symptom assessment, psychological factors, quality of life, physiological evaluation, genetic/epigenetic and microbiota analysis, biopsy/blood sampling, together with discussion on the organisational, ethical and language issues associated with implementing such a study. The proposed approach and documents selected to be used in such a study was the result of a thoughtful and thorough four-year dialogue amongst experts associated with the European COST action BM1106 GENIEUR (www.GENIEUR.eu).
Authors: Nikola Fritz; Sabrina Berens; Yuanjun Dong; Cristina Martínez; Stefanie Schmitteckert; Lesley A Houghton; Miriam Goebel-Stengel; Verena Wahl; Maria Kabisch; Dorothea Götze; Mauro D'Amato; Tenghao Zheng; Ralph Röth; Hubert Mönnikes; Jonas Tesarz; Felicitas Engel; Annika Gauss; Martin Raithel; Viola Andresen; Jutta Keller; Thomas Frieling; Christian Pehl; Christoph Stein-Thöringer; Gerard Clarke; Paul J Kennedy; John F Cryan; Timothy G Dinan; Eamonn M M Quigley; Robin Spiller; Caroll Beltrán; Ana María Madrid; Verónica Torres; Emeran A Mayer; Gregory Sayuk; Maria Gazouli; George Karamanolis; Mariona Bustamante; Xavier Estivil; Raquel Rabionet; Per Hoffmann; Markus M Nöthen; Stefanie Heilmann-Heimbach; Börge Schmidt; André Franke; Wolfgang Lieb; Wolfgang Herzog; Guy Boeckxstaens; Mira M Wouters; Magnus Simrén; Gudrun A Rappold; Maria Vicario; Javier Santos; Rainer Schaefert; Justo Lorenzo-Bermejo; Beate Niesler Journal: J Mol Med (Berl) Date: 2022-09-19 Impact factor: 5.606
Authors: Johanna T W Snijkers; Wendy van den Oever; Zsa Zsa R M Weerts; Lisa Vork; Zlatan Mujagic; Carsten Leue; Martine A M Hesselink; Joanna W Kruimel; Jean W M Muris; Roel M M Bogie; Ad A M Masclee; Daisy M A E Jonkers; Daniel Keszthelyi Journal: Neurogastroenterol Motil Date: 2021-05-03 Impact factor: 3.960
Authors: Sandra Mohr; Nikola Fritz; Christian Hammer; Cristina Martínez; Sabrina Berens; Stefanie Schmitteckert; Verena Wahl; Malin Schmidt; Lesley A Houghton; Miriam Goebel-Stengel; Maria Kabisch; Dorothea Götze; Irina Milovač; Mauro D'Amato; Tenghao Zheng; Ralph Röth; Hubert Mönnikes; Felicitas Engel; Annika Gauss; Jonas Tesarz; Martin Raithel; Viola Andresen; Thomas Frieling; Jutta Keller; Christian Pehl; Christoph Stein-Thöringer; Gerard Clarke; Paul J Kennedy; John F Cryan; Timothy G Dinan; Eamonn M M Quigley; Robin Spiller; Caroll Beltrán; Ana María Madrid; Verónica Torres; Edith Pérez de Arce; Wolfgang Herzog; Emeran A Mayer; Gregory Sayuk; Maria Gazouli; George Karamanolis; Lejla Kapur-Pojskič; Mariona Bustamante; Raquel Rabionet; Xavier Estivil; André Franke; Wolfgang Lieb; Guy Boeckxstaens; Mira M Wouters; Magnus Simrén; Gudrun A Rappold; Maria Vicario; Javier Santos; Rainer Schaefert; Justo Lorenzo-Bermejo; Beate Niesler Journal: J Cell Mol Med Date: 2021-06-24 Impact factor: 5.310