EpiCom
12March2020

5th EpiCom Workshop: Patient-reported outcomes: The value of measuring PROs and how to implement them in daily practice and research

Sophie Restellini and Julien Kirchgesner, EpiCom Members

Sophie Restellini
© ECCO

Julien Kirchgesner
© ECCO

The Epidemiological Committee (EpiCom) organised the 5th 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.

Posted in ECCO News, Committee News, ECCO'20, EpiCom, Volume 15, Issue 1

17December2019

5th EpiCom Workshop: The impact of PROs on clinical practice in 2020 and beyond

Marieke Pierik, EpiCom Member


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.

Posted in ECCO News, Committee News, EpiCom, Volume 14, Issue 4

12June2019

Hot topics in Epidemiology from ECCO’19

Naila Arebi, EpiCom Member

Naila Arebi
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.

Posted in ECCO News, Committee News, EpiCom, Volume 14, Issue 2

30April2019

New Committee Members in EpiCom

Marieke Pierik, EpiCom Chair

Marieke PierikMarieke Pierik
© ECCO

The mission of the Epidemiological Committee of ECCO is optimisation of epidemiological research methods in Europe. During the ECCO Congress in Copenhagen, EpiCom said goodbye to Laurent Beaugerie and Nynne Nyboe-Andersen. We greatly thanked them for all their contributions to EpiCom and welcomed two new members from two different countries: the Netherlands and France.  

Posted in ECCO News, Committee News, Congress News, ECCO'19, EpiCom, Volume 14, Issue 1

11December2018

The FAIR Principles: a roadmap to achieve a common language among IBD datasets?

Valerie Pittet EpiCom Member; Marieke Pierik EpiCom Chair

Valerie Pittet
Valerie Pittet
© ECCO
Marieke Pierik
Marieke Pierik 
© ECCO

 

The FAIR Data Principles propose that scientific outputs should be Findable, Accessible, Interoperable and Reusable [1]. Their aim is to encourage the adoption of good practices with respect to the publication of scientific research data. To this purpose, they provide a list of recommendations regarding documentation of data and datasets that are designed to be helpful for researchers and for computers.

Posted in ECCO News, Committee News, EpiCom, Volume 13, Issue 4

04October2018

How can epidemiology help in clinical practice?

Marieke Pierik, EpiCom Chair

Marieke Pierik
Marieke Pierik
© ECCO

The Epidemiological Committee of ECCO (EpiCom) works for the optimisation of epidemiological research in the field of IBD across Europe. Epidemiology focusses on the factors that influence health, the control and long-term outcome of diseases and the measurement of health outcomes. Epidemiology is data driven and to avoid bias and guarantee validity, systematic data collection, meticulous study design and careful selection of the population and method of analysis are crucial.

Posted in ECCO News, Committee News, EpiCom, Volume 13, Issue 3

08June2018

Enhancing collaboration with existing databases (including UR-CARE)

Naila Arebi, EpiCom Member

Naila Arebi
Naila Arebi © ECCO

Collaborations are the cornerstone of research studies – from inception of the idea to execution of the project, culminating in the final research goal of generating and sharing new knowledge. Information technology has transformed the way we collaborate, opening up new avenues for collaboration through enhanced remote communication between researchers as well as easier collation and sharing of research data across centres.

Posted in ECCO News, Committee News, EpiCom, Volume 13, Issue 2

27April2018

Report on the 4th EpiCom Workshop at ECCO'18

Naila Arebi, EpiCom Member

Naila Arebi
Naila Arebi © ECCO

An introduction to pharmaco-epidemiology: How to interpret real world data for clinical practice 

 

The Epidemiological Committee (EpiCom) organised their 4th workshop at the ECCO’18 Congress in Vienna.  Delegates were welcomed by Ebbe Langholz, who introduced the sessions with a short video on the UR-CARE database to illustrate the importance of databases and their potential across Europe. 

Posted in ECCO News, Committee News, ECCO'18, Congress News, EpiCom, Volume 13, Issue 1

12December2017

Update on Non-progressive CD Project

Marieke Pierik, EpiCom Member

Marieke PierikMarieke Pierik  ©  ECCO

The Epidemiological Committee (EpiCom) of ECCO promotes epidemiological research within the field of Inflammatory Bowel Diseases (IBD) across Europe. Population-based cohort studies on disease course and prognosis are of great interest for IBD epidemiology since in these cohorts a sample or all of the cases in a defined population are selected for longitudinal assessment of exposure–outcome relationships. 

Posted in ECCO News, Committee News, EpiCom, Volume 12, Issue 4

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