The global study was initiated in 2013 with its Executive Committee, a group of 13 leaders in the field who developed the study design and methodology. The primary aims of the global study were to: a) conduct an extensive multinational epidemiological study of all the DGBIs, b) to obtain reliable regional and local estimates of DGBI prevalence, to evaluate the reasons for differences among regions by collecting data on multiple potentially associated factors, and c) to generate hypotheses to advance further our understanding of the pathophysiology of IBS and the other DGBI. Secondary aims were to: a) generate a database that can serve as a source of data mining and be integrated with other similar databases in the future, and b) to establish a network of FGID experts with a track record of research collaboration on a global scale. A tertiary aim is to develop a repository of translated versions of the Rome IV adult diagnostic questionnaire in multiple languages, including linguistic validation (cognitive debriefing) and cultural adaptation.
In all, 33 countries participated in the study. The participating countries and the data collection method in each country are depicted in this map – See Figure 2
Data were collected by Internet survey (Qualtrics, Ltd.) in 26 countries where this was feasible. We conducted house-to-house personal interviews in 7 countries where this was not the case. In two countries, China and Turkey, we conducted both types of surveys. The pre-defined demographic parameters were 50% females and 50% males, and age distribution of 40% for 18-39 years, 40% for 40-64 years, and 20% for 65+ years.
The data collection phase was completed in 2018 with a final database of 73,076 respondents: 36,148 women (49·47%) and 36,928 men (50·53%). We successfully achieved equal sex distribution and pre-planned age ranges with both surveying methods.
We established a Database Committee, a Statistical Analysis Committee, and a Publications Committee. Initial statistical analyses were conducted by the Central statistical analysis core headed by Dr. Shrikant Bangdiwala at McMasters, Canada. We vetted candidates for global study statisticians and established regional and local statistical analysis cores. A one and one-half day Global Study Statistical Workshop was held in Barcelona Spain in October 2019, attended by about 40 participants from around the world, for individuals who will serve as analysts of data for regional and local manuscripts and investigators who intend to be lead authors of manuscripts from the study.
We have a website to submit proposals for abstracts or papers based on the study database. All proposals undergo a review process (including the statistical analysis plan) like editorial reviews in medical journals, but to improve and approve the proposals, not reject them.
The first paper, summarizing the major findings, was published in Gastroenterology (Sperber AD, Bangdiwala SI, Drossman DA, Ghoshal UC, Simren M, Tack J, et al. Worldwide Prevalence and Burden of Functional Gastrointestinal Disorders, Results of Rome Foundation Global Study. Gastroenterology. 2021;160:99-114). The following is the graphical abstract from that paper. This paper now has close to 900 citations and is a leading resource for research in the field.
In March-May 2021, we conducted a successful 8-session CME course on the Global Study with the presentation of study results expanded to a general course on DGBI with multiple case presentations and discussions based on the Multidisciplinary Clinical Profile (MDCP) approach. The sessions were presented live and remain available online to all paying participants for a year.
In May we published a special edition of Neurogastroenterology and Motility with 15 global study papers. The Introduction paper, with full details on the global study is attached here.
Papers: We have now published 31 papers, 9 more are under review in different journals, and another 31 studies are in the data analyses or draft writing stage.
Please see the linked table for a full listing of all papers, including senior authors, titles, aims, and, for published papers, doi.
Abstracts: We have presented 47 abstracts at multiple scientific meetings, including DDW and UEGW, including oral presentations, posters of distinction, and posters. & abstract will be presented at DDW 2024 including one oral presentation, one poster of distinction, and 5 other posters.
The Rome Foundation Global Epidemiology Study is an ongoing process that should continue to provide important findings for papers and to support other research in the future. It already serves as a major reference in the field of Gastroenterology in general and Neuro-Gastroenterology in particular.
Publications
Ami D. Sperber, MD
Global Epidemiology Program Director
Professor Emeritus of Medicine
Faculty of Health Sciences
Ben-Gurion University of the Negev
Beer-Sheva, Israel
Worldwide Prevalence and Burden of Functional Gastrointestinal Disorders, Results of Rome Foundation Global Study
Ami D. Sperber, MD, Shrikant I. Bangdiwala, PhD, Douglas A. Drossman, MD, Uday C. Ghoshal, MD, Magnus Simren, MD, Jan Tack, MD, William E. Whitehead, PhD, Dan L. Dumitrascu, MD, Xuicai Fang, MD, Shin Fukudo, MD, John Kellow, MBBS, Edith Okeke, BMBCH, Eamonn MM. Quigley, MD, Max Schmulson, MD, Peter Whorwell, MD, Timothy Archampong, MBChB, Payman Adibi, MD, Viola Andresen, MD, Marc A. Benninga, MD, Bruno Bonaz, MD, Serhat Bor, MD,Luis Bustos Fernandez, MD, Suck Chei Choi, MD, Enrico S. Corazziari, MD, Carlos Francisconi, MD, Albis Hani, MD, Leonid Lazebnik, MD, Yeong Yeh Lee, MD, Agata Mulak, MD, M. Masudur Rahman, MD, Javier Santos, MD, Mashiko Setshedi, MBChB, Ari Fahrial Syam, MD, Stephen Vanner, MD, Reuben K. Wong, MD, Aurelio Lopez-Colombo, MD, Valeria Costa, MD, Ram Dickman, MD, Motoyori Kanazawa, MD, Ammar Hassanzadeh Keshteli, MD, Rutaba Khatun, MSc, Iradj Maleki, MD, Pierre Poitras, MD, Nitesh Pratap, MBBS, Oksana Stefanyuk, MD, Sandie Thomson, MBChB, Judith Zeevenhooven, BSc, Olafur S. Palsson, PsyD
Gastroenterology (2020), doi: https://doi.org/10.1053/ j.gastro.2020.04.014.
Abstract
ADVANCES IN IBS: Current Developments in the Treatment of Irritable Bowel Syndrome
Highlights of the Findings From the Rome Foundation Global Epidemiology Study
Ami D. Sperber, MD, MSPH; Section Editor: William D. Chey, MD
Gastroenterology & Hepatology Volume 19, Issue 9 September 2023 564-567
Sperber, A. D. 2023. ‘The Rome Foundation Global Epidemiology study: Conception, implementation, results, and future potential‘, Neurogastroenterol Motil, 35: e14567.
Global Epidemiological Study Executive and Operational Committee Members
Shrikant I. Bangdiwala, PhD*†
Department of Health Research Methods, Evidence and Impact
McMaster University
Population Health Research Institute
McMaster University
Hamilton, ON, Canada
Douglas A. Drossman, MD†
Center for Functional GI & Motility Disorders
University of North Carolina
Center for Education and Practice of Biopsychosocial Care
Drossman Gastroenterology
Chapel Hill, North Carolina, USA
Dan L. Dumitrascu, MD*
Iuliu Hatieganu University of Medicine and Pharmacy
Cluj-Napoca, Romania
Xuicai Fang, MD*
Department of Gastroenterology
Peking Union Medical College Hospital
Chinese Academy of Medical Sciences and Peking Union Medical College
Beijing, China
Shin Fukudo, MD*
Department of Behavioral Medicine
Tohoku University Graduate School of Medicine
Sendai, Japan
Uday C. Ghoshal, MD*
Department of Gastroenterology
Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGI)
Lucknow, India
John Kellow, MBBS*
Discipline of Medicine, Northern Clinical School, University of Sydney, Sydney, Australia
Edith Okeke, BMBCH*
Department of Medicine
University of Jos, Jos University Teaching Hospital
Jos, Nigeria
Olafur S. Palsson, PsyD*†
Center for Functional GI & Motility Disorders
University of North Carolina-Chapel Hill
Chapel Hill, NC, USA
Eamonn Quigley, MD*
Lynda K and David M Underwood Center for Digestive Disorder, Gastroenterology and
Hepatology
Houston Methodist Hospital and Weill Cornell Medical College
Houston,
Texas, USA
Max Schmulson, MD*
Laboratory of Liver, Pancreas and Motility (HIPAM)
Unit of Research in Experimental
Medicine
Faculty of Medicine, Universidad Nacional Autónoma de Mexico (UNAM)
Hospital General de México
Mexico City, Mexico
Magnus Simren, MD†
Department of Internal Medicine and Clinical Nutrition
Institute of Medicine, Sahlgrenska Academy
University of Gothenburg
Gothenburg, Sweden
Ami D. Sperber, MD*†
Faculty of Health Sciences
Ben-Gurion University of the Negev
Beer-Sheva, Israel
Jan Tack, MD†
Translational Research Center for Gastrointestinal Disorders (TARGID)
University of Leuven
Leuven, Belgium
Peter Whorwell, MD*
Neurogastroenterology Unit
Manchester University NHS Foundation Trust
Wythenshawe Hospital
Manchester, UK
William E. Whitehead, PhD*†
Center for Functional GI & Motility Disorders
University of North Carolina-Chapel Hill
Chapel Hill, NC, USA
*Executive Committee
†Operational Committee
Country Principal Investigators
Payman Adibi MD • Isfahan, Iran | Viola Andresen MD • Hamburg, Germany | Timothy Archampong MBChB • Accra, Ghana | Marc A. Benninga MD, RFF • Amsterdam, The Netherlands | Bruno Bonaz MD • Grenoble, France | Serhat Bor MD • Bornova Izmir, Turkey | Suck Chei Choi MD • Iksan, Korea | Enrico S. Corazziari MD, RFF • Rozzano, Italy | Dan L. Dumitrascu MD • Cluj-Napoca, Romania | Xuicai Fang MD, RFF • Beijing, China | Luis Bustos Fernandez MD • Buenos Aires, Argentina | Carlos Francisconi MD, RFF • Porto Alegre, Rio Grande do Sul, Brazil | Shin Fukudo MD, RFF • Sendai, Japan | Uday C. Ghoshal MD, RFF • Lucknow, India | Albis Hani MD • Bogotá, Colombia | John Kellow MBBS, RFF • Sydney, Australia | Leonid Lazebnik MD • Moscow, Russia | Yeong Yeh Lee MD • Kota Bharu, Kelantan, Malaysia | Agata Mulak MD • Wroclaw, Poland | Edith Okeke BMBCH, RFF • Jos, Nigeria | M. Masudur Rahman MD • Dhaka, Bangladesh | Javier Santos MD, RFF • Baarcelona, Spain | Max Schmulson MD, RFF • Mexico City, Mexico | Mashiko Setshedi MBChB • Cape Town, South Africa | Magnus Simren MD, RFF • Gothenburg, Sweden | Ami Sperber MD, RFF • Beer-Sheva, Israel | Ari Fahrial Syam MD • Jakarta, Indonesia | Jan Tack MD, PhD, RFF • Leuven, Belgium | Stephen Vanner MD, RFF • Ontario, Canada | William Whitehead PhD, RFF • Chapel Hill, United States | Peter Whorwell MD, RFF • Manchester, UK | Reuben K. Wong MD • Singapore
Study Director, Ami D. Sperber, MD, MSPH, on the scope of the data and its impact on the science of epidemiology
Sponsors
The Rome Foundation gratefully acknowledges our industry sponsors, Allergan, Ironwood, Shire, Takeda Israel and the Romanian Society of Gastroenterology & Hepatology for their indispensable support. The study in Malaysia was funded by the Fundamental Research Grant Scheme (FRGS) of the Ministry of Education of Malaysia (Reference: 203.PPSP.6171192).