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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 are 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 are 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 

Figure 2 – Countries participating in Global Epidemiology Study

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.

A global epidemiological study of functional GI disorders

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:

Prevalence and Burden of DGBI around the world

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.

Since the initial paper, we have published four other articles, and another one is under review in a top-tier journal. The 4 published papers are:

1) Sperber AD, Freud T, Aziz, I. et al. (2021). Greater overlap of Rome IV disorders of gut-brain interactions leads to increased disease severity and poorer quality of life. Clin Gastroenterol Hepatol https://doi.org/10.1016/j.cgh.2021.05.042.

2) Josefsson A, Hreinsson JP, Simrén M, Tack J, Bangdiwala SI, Sperber AD, Palsson OS, Törnblom H. (2022) Global prevalence and impact of Rumination syndrome. Gastroenterol 2021 162: 731-742. doi: 10.1053/j.gastro11.008

3) Sperber AD, Freud T, Abu-Freha N, Shibli F, Brun R, Bangdiwala, SI, Palsson OS, Dickman R. (2022) The Epidemiology of Disorders of Gut-Brain Interaction in Israel: Results from the Rome Foundation Global Epidemiology Study. Neurogastroenterol Motil. doi: 10.1111/nmo.14323.

4) Colomier E, Melchior C, Algera, JP, Hreinsson JP, Störsrud S, Törnblom H, Van Oudenhove L, Palsson OS, Bangdiwala SI, Sperber AD, Tack J, Simrén S. (2022) Global prevalence and burden of meal-related abdominal pain. BMC-Medicine 20:71. doi.org/10.1186/s12916-022-02259-7.

Twenty other studies have been approved and are in varying stages of data analysis and manuscript preparation. 

We are receiving more proposals for study on a regular basis and the global study database will also be used for studies under the auspices of the Rome Foundation Research Institute (RFRI) and by a major global study data mining project to provide background data for the Rome V committees, led by Drs. Sperber, Palsson, and Bangdiwala.

We have presented abstracts at multiple scientific meetings including DDW and UEGW, starting in 2020 and will be presenting 6 posters at DDW 2022:

1) Gastroparesis-like symptoms – Abstract # 3695758 on May 21

2) Diet and DGBI – Abstract # 3693820 (e-poster)

3) Burden of Pain in DGBI – Abstract # 3691932 on May 23

4) Psychological factors in DGBI – Abstract 3696085 on May 23

5) Factor analysis – Abstract # 3698357 on May 23

6) DGBI Romania – Abstract # 3692626 on May 24

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

0923-IBS-Sperber-r1-1

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

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

Drossman
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

Xiucai Fang, MD
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, MD
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

Dr. Olafur Palsson
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 J. Schmulson W., MD
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 Simrén
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, PhD
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).

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