Inflammatory Bowel Disease Research Priorities Project (Australia) (priority setting in association with the JLA)

About this PSP

Inflammatory bowel disease (IBD) is a medical term that describes a group of conditions in which the gastrointestinal tract (gut) becomes inflamed (red and swollen). Two major types of IBD are Crohn’s disease and ulcerative colitis which are Iife-long gastrointestinal disorders that can present themselves in children, adolescents and adulthood. The relapsing and chronic nature of the disorder has broader impacts on a person’s emotional, physical and social wellbeing.

More than 100,000 Australians live with these conditions, with numbers expected to increase. The conditions are becoming more prevalent, more severe and more complex and are being diagnosed in more and more very young patients.

Crohn’s & Colitis Australia worked in collaboration with the James Lind Alliance to identify the Top 10 research priorities of people with IBD, carers and healthcare professionals.

The Inflammatory Bowel Disease (Australia) Top 10 was published in May 2022.

Inflammatory-Bowel-Disease-Australia-Research-Priorities-Report-2022.pdf

Inflammatory-Bowel-Disease-Australia-Research-Priorities-Infographic-2022.pdf

inflammatory-bowel-disease-australia-question-gathering-survey.pdf

inflammatory-bowel-disease-australia-question-gathering-survey-communication-material.pdf

inflammatory-bowel-disease-australia-prioritisation-survey.pdf

inflammatory-bowel-disease-australia-interim-prioritisation-survey-communication-material.pdf

IBD-in-Australia-Data-Management-Spreadsheet.xlsx

Inflammatory-Bowel-Disease-Australia-Research-Priorities-E-poster.pdf

Top 10 priorities

  1. What are the risk factors for developing IBD (e.g. environmental factors, stress, insecticides, vaccines, antibiotics, glandular fever, removed appendix, susceptibility genes)?
  2. How can microbiome (bacteria and other organisms) be modified to prevent IBD?
  3. How can IBD be prevented (including those with a family history of IBD or genetic risk, and lifestyle factors, such as food and exercise)?
  4. How can quality of life be improved for people with IBD (e.g. reduced visits to the toilet, coping with illness and psychological support)?
  5. How can an individual's response to specific IBD medications be predicted?
  6. How can food cause or prevent IBD symptoms and/or improve IBD disease severity?
  7. What are the potential short- and long-term health effects from taking different IBD medications?
  8. What is the most effective treatment for maintaining remission in IBD?
  9. What is the link between IBD and mental health and are people with IBD adequately screened for mental health conditions?
  10. What is the cause of IBD flares and how can they be recognised and avoided?

The following questions were also discussed and put in order of priority at the workshop:

  1. Why do people with IBD feel fatigued and how can it be managed?
  2. What lifestyle factors can improve IBD severity?
  3. How can childhood experiences (e.g. mental health status and adverse life events) and illness (e.g. asthma and pneumonia) influence the development of IBD?
  4. What effect does IBD have on aging (e.g. life expectancy, severity and other health conditions)?
  5. What is the cause of joint pain for people with IBD?
  6. Can food additives lead to IBD diagnosis or IBD flares?
  7. What is the role of stem cell treatment in the treatment of IBD?

Document downloads

For full details of all of the questions identified by this PSP, please see the document below.

IBD-in-Australia-Data-Management-Spreadsheet.xlsx