A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence
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.
Implementation and short-term adverse events of anti-SARS-CoV-2 vaccines in Inflammatory Bowel Disease patients: an international web-based survey
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.
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.
Conference at the European Parliament, 17 October 2013
“Equal Rights for Citizens with IBD” was the main message emerging from the conference organized by EFCCA in cooperation with the European Crohn’s and Colitis Organisation (ECCO) and United European Gastroenterologists (UEG) which took place in the European Parliament on 17 October.
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.
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 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.
From 4-6 February 2016 EFCCA (the European Federation of Crohn´s and Ulcerative Colitis Associations) together with GAfPA (Global Alliance for Patient Access) organised an advocacy workshop on patient safety which took place in Barcelona and gathered over 60 patient representatives from a wide range of immune modulate disease groups.