Advocacy

A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence

A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence

May, 2021

Heterogeneity exists in reported outcomes and outcome measurement instruments (OMI) from observational studies. A core outcome set (COS) for observational and real-world evidence (RWE) in inflammatory bowel disease (IBD) will facilitate pooling large datasets. This systematic review, describes and classifies clinical and patient-reported outcomes, for COS development.

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Anti-SARS-CoV-2 vaccines in IBD

Implementation and short-term adverse events of anti-SARS-CoV-2 vaccines in Inflammatory Bowel Disease patients: an international web-based survey

May, 2022

Anti-SARS-CoV-2 vaccines clinical trials did not include patients with immune-mediated conditions such as inflammatory bowel disease (IBD). The study aimed to describe the implementation of anti-SARS-CoV-2 vaccination among IBD patients, patients' concerns and side-effect profile of the anti-SARS-CoV-2 vaccines using real-world data.

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IMPACT

The IMPACT survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011.

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ECCO EFCCA Patient Guidelines

In December 2014 the European Crohn’s and Colitis Organisation (ECCO) organised a meeting with IBD Patient Association Representatives and ECCO National Representatives (both nurses and physicians) with the aim to improve patient care and the quality of life for patients with inflammatory bowel disease (IBD). Patients, physicians and nurses were assembled in focus groups and reviewed topics which are of high relevance to patients. The overall outcome of this meeting was that there was an imminent need for patient guidelines.

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IMPACT survey

New IMPACT publication

 

On the occasion of World IBD Day, we are making available our latest publication of the IMPACT survey.

 

The survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011. IMPACT II is now on-going in several other countries in and outside Europe.

 

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EFCCA Symposium: Digital Health and Data Collection

EFCCA organised a symposium on “Digital Health and Data: IBD patients´ view and perspectives”  which took place during the ECCO Congress on 14 February 2020 from 14-15h in Vienna, Austria.

This was an unique event bringing together IBD patients, healthcare providers and other stakeholder in order to start discussions on how digital health and big data can contribute in delivering more personalised care and offering a higher quality of life of patients with IBD.

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