There is still a lot unknown about inflammatory bowel diseases (IBD). The conditions can be difficult to diagnose, hard to treat and many people living with Crohn’s disease or ulcerative colitis, the most common types of IBD, don’t have the answers they need to manage their disease well.
In Australia, we have one of the highest prevalence of IBD in the world, estimated to be at 330 per 100,000 Australians.
Research is crucial for improved care but traditionally the direction research takes is largely influenced by scientists and the pharmaceutical industry. For the first time, Crohn’s & Colitis Australia (CCA) has brought the IBD community’s voice into the equation through the IBD Research Priorities Project.
“Offering up my opinion on behalf of people like myself was so rewarding and I felt like I could be really making a difference for the world of Crohn’s and colitis. The Research Priorities Project is so important because it allows people like me to have a real voice in terms of what we want answers on in regards to Crohn’s and colitis.”
– Marnie O’Brien, Steering Committee member living with IBD
890 IBD research uncertainties were identified in a national online survey completed by 224 participants, 170 of whom were people living with Crohn’s or colitis.
Through a series of surveys and discussions involving people with IBD, carers, healthcare practitioners and clinical researchers, unanswered IBD research questions were identified and prioritised into a list of 10. To find out which research questions made the final cut download the Australia’s Top 10 Priorities report on the CCA website from Wednesday 25 May.
“To be part of such an in-depth process, guided by the James Lind Alliance; to arrive at the top 10 research questions was very rewarding. The actual process and the knowledge and ideas of the steering group were amazing, and it was a privilege to be part of the project. The questions put to researchers are what everyone would like answers to.”
– Cassandra Anslow, Steering Committee member and carer.
These questions will shape future research into IBD and act as evidence to encourage government, health and research councils, and philanthropic organisations to fund research that answers the questions asked by people who are the most affected by Crohn’s and colitis.
“This project determined what the research priorities are for all players involved in the IBD world and this was achieved through a rigorous evidence based and equitable process through which redundancy was also avoided.”
– Prof Susan Connor, Steering Committee member and Head of IBD Service, Liverpool Hospital
With your help we can get started on answering these important research questions. A donation from you will help fund researchers in our scholarship program to investigate areas like the microbiome, prevention of IBD and personalised treatment, which were highlighted by the project. You can also share the report with others you think may be interested in raising awareness of IBD and the current research opportunities.
To donate, please complete the attached form and return it in the enclosed reply paid envelope, or donate online at www.crohnsandcolitis.org.au any time, and a tax deductible receipt will be emailed to you. If you prefer, you can call CCA on 1800 138 029 to make a donation or for more information on regular giving to support CCA’s work and the Crohn’s and colitis community.
Thank you for considering a gift of any size and helping to advance research into Crohn’s and colitis.
This project is an important first step in identifying what is important for the IBD Community to know and your support will allow CCA to fearlessly advocate for targeted action.
Chief Executive Officer
Crohn’s & Colitis Australia