Defining the Clinical Features and Prognosis of Post Infectious and other IBS groups using the World Wide Web
The European Gastroenterology Federation is undertaking a survey of patients with irritable bowel syndrome. This is a web based survey designed to help us learn more about the irritable bowel syndrome in order that we might better plan treatments and management. We are particularly interested to know how the symptoms develop over time. If you feel that you are able to help, please go to the following url postinfectious-ibs.eu to complete the simple online questionnaire. We estimate this will take 30 minutes at the most. Please note that all sufferers with IBS are welcome to take part whether their symptoms began with an infection or not.
Before you decide, it is important for you to understand why the research is being done and what will be involved. Please take the time to read the following information carefully and if necessary discuss with friends, relatives or your GP.
Irritable bowel syndrome is a common condition affecting up to 1 in 10 of the population. A proportion of patients develop their symptoms after a bout of infectious gastroenteritis. Recent studies have suggested that the features of this condition may be different from those of IBS whose onset is more gradual. One of the most important questions for individual patients is how long the symptoms will continue but there is little known about this. A number of factors are thought to be important in determining recovery from the irritable bowel syndrome but so far studies have not been big enough to be certain of the results. The aim of this world wide survey will be to gather together the experience of a large number of patients with irritable bowel syndrome, both those in whom it has begun with an infection and those in whom it has not. By comparing these we will be able to understand more about both conditions.
You have been invited to take part because you have been diagnosed by your doctor as having irritable bowel syndrome. We would like to recruit at least 2,000 patients with irritable bowel syndrome.
We do NOT want you to take part if:
Taking part in the research is entirely voluntary and your own doctor will not know whether you have taken part or not. If you decide not to take part if won’t affect any treatment you may receive in the future. If you decide to take part you are still free to withdraw at any time without giving a reason.
All you have to do is complete this questionnaire. At the end of the questionnaire we will invite you to leave us an e-mail address which we will use solely to contact you on an annual basis to ask how your symptoms are progressing. This will involve completing symptom questionnaires again. You may exclude this possibility by ticking the respective box. In this case, however, we will not be able to delete your data in case you may want this at a later stage.
There will be no direct benefit to yourself but if our understanding of the irritable bowel syndrome improves then others with a similar condition may find that their treatment is better.
All you need do is send us an e-mail to say you don’t want to participate anymore and we will not contact you further.
If you have any complaints about any aspect of the study you should contact Professor Robin Spiller, Wolfson Digestive Diseases Centre, C Floor, South Block, University Hospital, Nottingham, NG7 2UH – Tel 0115 8231090 , or email his secretary at email@example.com or contact Louise Sabir, Secretary of the University of Nottingham Medical School Ethics Committee, Division of Therapeutics and Molecular Medicine , D Floor, South Block, Queen’s Medical Centre, Nottingham, NG7 2UH Email firstname.lastname@example.org
Any information you provide will be coded and stored on a secured database. Only the researchers involved will have access to this. The information resulting in the study will be published but not in a way that can be linked to you personally. All information collected about you during the course of the research will be kept strictly confidential. Any information about you which leaves the hospital will have your name and address removed so that you cannot be recognised from it.
This will be presented at National and International medical meetings and published in peer reviewed medical journals. They may indicate ways in which patients suffering from irritable bowel syndrome can be helped in the future.
The United European Gastroenterology Federation which commissioned this study is providing a small sum of money to cover administrative operating costs.
All research in the health service is looked at by an independent group of people called a research ethics committee to protect your safety, rights, wellbeing and dignity. This study has been reviewed and given a favourable opinion by University of Nottingham Medical School Ethics Committee.
If as a result of completing the questionnaire you have any questions or concerns about your symptoms unfortunately we cannot provide medical advice over the internet. We therefore would suggest that you ask your local primary care doctor or seek specialist advice from a local gastroenterologist.
Thank you for reading this information sheet.