Naila Arebi  © ECCO

The level of confidence in evidence generated by research is reflected in various aspects of study design and underpins clinical guidelines in Inflammatory Bowel Disease (IBD). The quality of research study designs, each with inherent strengths and limitations, determines confidence in the results, and it is acknowledged that some ‘robust’ study designs may not be feasible in specific contexts [1, 2]. Experimental designs such as randomised controlled studies that are characterised by methodological rigour, may be unsuitable to study effectiveness owing to their weak external validity, which is attributable to their strict eligibility criteria. Reliance on complementary or alternative evidence from other study designs to address residual gaps in knowledge is not uncommon. Non-experimental observational study designs capture a more diverse population, albeit in a less stringent setting, resulting in several methodological limitations, including high risk of bias and unbalanced confounders [2]. The increasing digitalisation of medicine, in addition to accessible diverse sources of data, is partly responsible for recent intensification of interest in evidence generated by analysing data from observational studies with the purpose of offering new insights into the effectiveness and safety of interventions as well as understanding healthcare delivery and quality of care. The systematic analysis of data from multiple data sources outside a research setting is referred to as real-world studies (RWS), and its subsequent analysis and conclusions as real-world evidence (RWE) [3].

A total of 76 abstracts focussing on IBD epidemiology were accepted for presentation at the 16^th Congress of ECCO. Among the ten best abstracts, one was presented in the scientific programme and nine in digital oral presentation (DOP) sessions. The remaining 66 abstracts were presented as posters.

Behrooz Alizadeh  © ECCO

Inflammatory Bowel Disease (IBD) is a chronic relapsing and remitting disease of the gut. IBD has a lifelong adverse impact on quality of life and imposes a significant burden on health care [1, 2]. The pathogenesis and course of IBD involve pathogenomic crosstalk among several complex internal components [3, 4], namely the genome [5], epigenome [3, 4], metabolome [3, 4, 6], immunome and microbiome [6–9]; this crosstalk is generally triggered through a set of external complex interactions among the exposome [10–13], dietome [14, 15], lifestyle, social and behavioural factors [16]. While some of these multi-level interactions trigger the disease, others drive the disease course. Therefore, in each IBD patient the disease arises through a (unique) combination of pathogenenomic (risk) factors or pathway that yield a specific set of disease manifestations and a specific disease course. In this context, an “individualized” therapy is required [17–19].

Sophie Restellini  © ECCO

Digital health is a broad concept encompassing categories such as mobile health (mHealth), health information technology (HIT), wearable devices, telehealth and telemedicine, with several aims, one of which  is to foster the development of personalised medicine [1, 2].

Digital care meets the same requirements as in-person medicine (regarding ethics, patient consent, authentication of health professionals, report of consultation in the patient's file). Pre-COVID-19 this model of care was successfully used to monitor patients with a variety of chronic illnesses, and it gained traction after the emergence of COVID-19 because of the emerging need to apply alternative ways of delivering healthcare without human contact.

Berhooz Z. Alizadeh  © ECCO

Introduction

In the past few decades, the incidence of Inflammatory Bowel Diseases (IBD) started rising especially in industrialised Western countries, affecting more than two million Americans and Europeans [1–3]. At the turn of the twenty-first century, however, IBD became a global disease, rapidly affecting the Eastern and Southern developing nations [3–5]. So, the global prevalence of IBD is currently estimated at 0.7% and is expected to increase to 1% by 2030 [1, 3, 6].The rise in IBD has coincided with an increase in urbanisation, sanitisation, and adoption of a Western lifestyle [4], as well as advances in infrastructure, better access to healthcare, and increased awareness of community following socioeconomic development. It is therefore assumed that the primary suspect underlying the globalisation of IBD is the alteration of the human environment, called the exposome (meaning exposures to environmental and lifestyle factors throughout life, starting at conception), and the associated embracing of Western lifestyles by other nations [6].

Sophie Restellini © ECCO

Valerie Pittet © ECCO

Introduction

Infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), leading to coronavirus disease 2019 (COVID-19), spread exponentially, with the World Health Organization (WHO) declaring a pandemic on March 11 [1]. By August 15, more than 21,000,000 cases and 755,000 deaths had been reported worldwide [2]. People of any age with certain underlying medical conditions are at increased risk for severe illness from COVID-19.

Naila Arebi  © ECCO

"Out with the old, in with the new"

Change is the cornerstone of the innovation that drives science forward. Of many expressions that capture change, ‘out with the old, in with the new’ expresses well what occurs when the composition of committees alters. As members step down and new members take their place, fresh ideas and different perspectives are heard, leading to renewed enthusiasm that will drive the agenda for the future. Against this backdrop, EpiCom welcomes Sophie Restellini while bidding a sad farewell to Marieke Pierik.

Sophie Restellini © ECCO

Julien Kirchgesner © ECCO

The Epidemiological Committee (EpiCom) organised the 5^th EpiCom Workshop at the ECCO’20 Congress in Vienna. The delegates were welcomed by Marieke Pierik, who introduced the concept of patient-reported outcomes (PRO) with the aid of a clinical case. The discussion continued by examining discrepancies between what a treating physician defines and sees as a response to therapy and the perceptions of the treated patient. Physician and patient may hold different views on the effectiveness of a treatment, particularly if the physician bases the evaluation of treatment success solely on improvements in clinical, biochemical and endoscopic measurements, without considering the patient’s quality of life and wellbeing. Integration of PROs into the evaluation can play a pivotal role in overcoming this issue.

Marieke Pierik © ECCO

The World Health Organisation defined health in 1948 as a status of complete physical, psychological and social well-being. Complete well-being is, however, difficult to obtain and even harder to maintain, bearing in mind that over 50% of adults suffer from a chronic disease, people are living longer than ever and continuous environmental influences are resulting in physical or mental symptoms. Therefore, health was recently redefined as a dynamic status of subjective physical, psychological and social well-being. Health care is the maintenance or improvement of health via the prevention, diagnosis and treatment of disease, injury or other physical or mental impairments in people. Patient-reported outcomes are outcomes directly reported by patients without prior interpretation by health care professionals. Compared with clinical outcomes (e.g. corticosteroid use, hospitalisation, surgery), they provide a more holistic interpretation of the effect of interventions or a condition on people by also taking into account the patient perspective and psychological and social aspects.

Naila Arebi © ECCO

While the traditional role of epidemiology was the study of communicable diseases, it has evolved to a modern approach geared towards the study of the increasing incidence of non-communicable chronic diseases. Epidemiology may be defined as the collection of large sample sizes and the measurement of numerous variables from stored samples to facilitate estimation of disease risk over time, and may involve the development and use of new techniques to acquire dependent and independent variables [1]. Nevertheless, the traditional view of epidemiology remains embedded as the study of epidemics. In studying Inflammatory Bowel Disease (IBD) as an epidemic, several aspects were addressed at ECCO'19 Copenhagen Congress, including changes in the incidence/prevalence of IBD in different populations (countries), effects of therapy on surgical rates, the incidence of complications such as colorectal cancer, the impact of treatment patterns and findings in smaller sub-populations such as patients with elderly-onset and perianal Crohn’s Disease (CD). Although the modern definition carries a risk that studies will be conducted without a specific hypothesis thereby generating statistically significant observations of no clinical relevance nor benefit, the studies presented at ECCO 2019 addressed clinically important questions.