Original article posted 4th April 2022. Please note that as of 31st July 2022, the IBD-BOOST Survey is closed to new respondents.
Fatigue, pain and urgency are a huge burden for many people living with IBD and can persist even when in remission. IBD-BOOST aims to develop and evaluate ways to improve the well-being of people who experience them, and the programme consists of three studies: the IBD-BOOST Survey, IBD-BOOST Optimise and the IBD-BOOST Trial.
Anyone diagnosed with IBD - whether Crohn’s disease, ulcerative colitis or other forms of IBD, or if you have had a colectomy for ulcerative colitis – is encouraged to complete the IBD-BOOST Survey. By telling the BOOST team how IBD impacts you, you could help develop better ways to manage symptoms of IBD. It doesn't matter what symptoms you do or don't have; they want to hear everyone's experiences. If you complete the survey and want to continue taking part in the next stage of their study, then the researchers may offer you a new way of managing these symptoms, or they might not (they may not be able to include everyone).
By late March, 3,971 patients in the IBD BioResource at the NIHR BioResource have completed the Survey, representing approximately half of the 7,971 responses the study organisers have received.
NIHR BioResource are incredibly pleased to have been able to provide so many survey respondents to the programme and its testament to our volunteers and the BioResource model that we can provide rapid access to a large cohort of suitable participants with great efficiency.
The IBD-BOOST programme is hosted by London North West University Healthcare NHS Trust and funded by the National Institute for Health Research (NIHR). The purpose of the IBD-BOOST Survey is two-fold: to find out how many people with IBD, including Crohn’s disease and ulcerative colitis) experience fatigue, pain and urgency, and to find out how many want help managing these symptoms.
There is still time to contribute! Organisers are inviting patients with IBD to complete the survey up until the end of July 2022, so if you or anyone you know has a diagnosis of Crohn's disease, ulcerative colitis or other forms of IBD, the IBD-BOOST programme team want to hear from you.
They are particularly interested in hearing from men under 35 and people from ethnic minority backgrounds, but welcome all matching the eligibility criteria to respond. It only takes about 20mins to complete the Survey and you can find all the information you need to know in the Survey introduction.
If you have any questions about IBD-BOOST, including the Survey, please head to the programme website or contact the team on ibd-boost@kcl.ac.uk and/or 020 7848 3318.
You can learn more about the IBD BioResource and how to join via the NIHR BioResource website. Researchers can find out how the BioResource could support your work and if you have any questions, you can always email us on nbr@bioresource.nihr.ac.uk
