https://www.dccv.de/betroffene-angehoerige/leben-mit-einer-ced/infektion... people especially those with chronic diseases such as IBD and/or who are taking immunosuppressant medications migth be concerned about the novel Coronavirus 2019 (COVID-19).
EFCCA Patient Talk: Seasonal vaccines and IBD
Watch the event on Youtube: https://www.youtube.com/watch?v=0bE5C3mvmQY
Friday 27 November 2020, 3-4 pm
Do you have IBD (Crohn’s disease, ulcerative colitis or indeterminate colitis)? Are you worried about the recent COVID-19 pandemic? Our colleagues from Crohn´s and Colitis Australia are seeking people who would like to test an online expressive writing tool. For more information or to express interest visit: https://www.crohnsandcolitis.com.au/research/clinical-trials/current-researc/
We are sharing information about a study to evaluate patient preferences for treatment goals in inflammatory bowel disease (IBD). The primary objective of this study is to evaluate and quantify patient preferences for IBD treatments, trading-off between different attributes of efficacy, complications/risks of treatment and health-related quality of life (HRQOL) in IBD. This will be a multi-country, cross-sectional, non-interventional online survey in adult patients with IBD. The study is available in English, French, German, Dutch, Italian, Portuguese and Spanish.
BAB survey
In late 2014 we launched a survey entitled BAB – Biologics and Biosimilars to assess patients knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The scientific coordinator of the BAB survey is Professor Laurent Peyrin- Biroulet - from the Department of Hepato-Gastroenterology CHU in Nancy, France.
Coronavirus and IBD Reporting Registry!
Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-IBD) is an international, pediatric and adult registry to monitor and report on outcomes of COVID-19 occurring in IBD patients.
EUnetHTA deems patient involvement very important in the production of Joint Assessment reports. We recognise that patients and those who support them have unique knowledge about what it is like to live with a specific disease or medical condition. We believe patient groups can help us understand patients’ unique perspectives by collecting and presenting patients’ and carers/care-givers’ views and experiences by engaging with a wide range of patients.
We are happy to share a series of IBD podcast that have been prepared by our colleagues from the Serbian IBD patient association UKUKS together with Stetoskop info. They are subittled in English and deal with a wide range of relevant and interesting topics related to IBD.
You can view them here: https://www.youtube.com/playlist?list=PLqc3GWypjDT4gwBq3tEz9mctZWBi2pZQM
EFCCA is partner in an exciting #Horizon2020 project called ImmUniverse aimed at improving diagnostic and therapeutic options for patients living with #ulcerativecolitis and #atopicdermatitis. Go and check out the freshly launched @IMI_JU #ImmUniverse website! You can now keep yourself up-to-date on all major project developments by visiting www.immuniverse.eu #ulcerativecolitis #atopicdermatitis #IMI_JU #H2020
One effect of the COVID-19 pandemic which is given less importance in the media coverage is the effect it has on people´s mental health. Fears and worries are normal responses to any real or perceived threat and is not surprising that many people are coping with higher levels of fear and anxiety during the COVID-19 pandemic.
Besides the fear of becoming infected with the virus other changes due to the lockdowns and restrictions in our daily habits have a significant impact on our mental well-being.