New survey!!!

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What if there was the possibility of predicting and preventing IBD?

Would you accept it? If yes, to what extent?

A survey about perceptions regarding the possibility of prediction and prevention of IBD

Inflammatory Bowel Disease encompasses a set of chronic diseases, which are incurable and have a significant personal and social impact. It mainly affects young adults and can have devastating consequences in terms of quality of life, healthcare resource consumption and productivity. While many advances have been made towards improving the care of IBD patients, there still remains a therapeutic ceiling and many patients, regrettably, still suffer from disability caused by the disease. Furthermore, the incidence of IBD continues to rise across the world, especially in areas where access to care may not be universal. Therefore, besides improving the treatment of IBD and continuing to search for its cure, it is equally important to predict and prevent new cases of IBD.

It is currently recognized that inflammatory bowel disease has a pre-clinical phase that begins many years before clinical diagnosis. Although the initial events of immune dysregulation leading to irreversible chronic gastrointestinal inflammation are currently unknown, they conceivably occur years before symptoms and diagnosis become evident. 

However, all therapeutic interventions in IBD target an already established disease, and even the most potent agents cannot prevent or reverse chronic damage often present at diagnosis. Therefore, to truly change the natural history and long-term consequences of the disease, intervention should occur at an earlier stage, targeting the processes that drive the disease from a pre-clinical phase (before the development of symptoms and gastrointestinal damage) to a clinical phase (when symptoms and gastrointestinal damage are already present).

However, even if IBD can be predicted and prevented, the decision to undergo a series of predictive tests or adopt preventive measures, which may involve risks, can be complex. To our knowledge, no study has been conducted on asymptomatic individuals at high risk of developing IBD to understand the factors that could be involved in the decision to adopt preventive measures or undergo predictive tests.

However, this is a crucial aspect, because understanding people's perceptions of risks and benefits and their willingness to undergo predictive or preventive methods is essential for the future design and implementation of screening and prevention strategies.

In this regard, we have developed a study aimed at asymptomatic individuals at high risk of developing IBD (first-degree relatives of patients with Crohn's disease or ulcerative colitis) and prospective parents with IBD to assess the most important factors in the decision to undergo predictive tests or adopt preventive measures for IBD. 

A survey has been distributed and we already have collected some responses from people from more than 25 different countries. However, we need to have your opinion and your first-degree relative opinion on this topic. Opinions may vary, depending on perception of disease, knowledge about disease and fear of tests or interventions. 

We need to hear as many voices as possible, especially from first-degree relatives of people with IBD. 

You still have time to participate, encourage your relatives, and be part of IBD research!

To do so, you just have to fill out this survey. It is available in different languages and will take no more than 10-15 minutes:

Md. PhD Joana Torres
Md. Ana Catarina Bravo

Gastroenterology Division
Hospital Beatriz Ângelo & Hospital da Luz