In this area you will be able to:
- Propose, vote on, and discuss research ideas
- View current studies
- View published research
Here, you can submit a research idea to the community, cast your votes, and discuss research ideas proposed by other members. Please make your research question as specific as possible. Other members will vote on your research idea, and we will prioritize research ideas with the most votes.
You are allowed to vote for your own proposed research idea if you want. However, you can only vote for a total of five research ideas. If you have already cast your five votes and an idea you like even more is proposed, you can change your votes at any time to reflect your current preferences.
The research team will review all submitted ideas and provide a response to you and to the community. If your idea leads to an IBD Partners Study, you will have the opportunity to serve as a patient collaborator on the research team for that study.
We encourage you to prioritize the ideas that are most important to you, even if the research team determines that your idea is not a good fit for IBD Partners. We will share ideas labeled “Not a Good Fit” with researchers outside of our network when appropriate. We want to make sure all of your votes count!
Thanks for your participation in this important platform to help the IBD research community understand what research questions are important to patients. We are passionate about finding answers to your questions!
Symptom Clusters in Adults with Inflammatory Bowel Disease
Symptoms (pain, fatigue, sleep disturbance, depression, and anxiety) are common among people with Inflammatory Bowel Disease (IBD). We know people do not experience only one symptom and symptoms may occur is clusters. Symptom clusters are two or more symptoms that occur together and are related. Understanding how symptoms cluster is needed so that we can develop methods that decrease multiple symptoms in IBD. The purpose of this study was to (a) describe how symptoms cluster in IBD, and (b) to describe the relationship between demographic and clinical factors and symptom cluster membership.
Full Scientific Manuscript
symptom clusters; pain; fatigue; sleep disturbance; depression; anxiety; low symptom cluster; high symptom cluster; Crohn’s disease; CD; ulcerative colitis; UC
|Study Updates, Medications, Treatment|
Medication Utilization and the Impact of Continued Corticosteroid Use on Patient-Reported Outcomes in Elderly Patients with Inflammatory Bowel Disease
Older patients with inflammatory bowel disease, or IBD, often have higher rates of hospital stays and disease complications. Past studies have shown that medical treatment plans for older IBD patients may be different than those for younger patients. One difference is that treatment plans for older IBD patients involve increased use of 5-aminosalicylates (5-ASA) and corticosteroids. It is not known how continuous use of steroids by older patients affects anxiety, depression, sleep, and fatigue. Using data from CCFA Partners surveys we wanted to 1) describe medication use in older versus younger IBD patients and 2) determine whether continuous use of steroids by older patients leads to differences in anxiety, depression, sleep, and fatigue. We found that medication use is different among older patients. Older patients with Crohn's disease have more continued steroid use than younger patients. Continued steroid use was associated with worsened anxiety, sleep, and fatigue. Also, steroid use alone in older Crohn's disease patients was associated with increased depression and anxiety. As in younger IBD patients, our findings support limiting the continuous use of steroids for treatment of IBD in older populations.
Full Scientific Manuscript
geriatric; elderly; age; steroid; corticosteroid; drugs
Evaluation of the Patient Reported Outcomes Measurement Information System in a Large Cohort of Patients with Inflammatory Bowel Diseases
Patient-reported outcomes, or PROs, can give useful information to doctors and researchers about patient health. In a study of over 7000 patients with inflammatory bowel disease, or IBD, PROs showed that IBD patients had more anxiety, depression, fatigue and sleep disturbance, and less social satisfaction than the general population. Using corticosteroids made all of the outcomes worse. These results showed that IBD patients, like patients with other chronic illnesses, were lower functioning than the general population.
Full Published Manuscript
social health; comorbidity
|Lifestyle, Mental Health|
Sleep Disturbance and Risk of Active Disease in Patients With Crohn's Disease and Ulcerative Colitis
People with inflammatory bowel disease (IBD), like Crohn's disease and ulcerative colitis, tend to have poor quality of sleep. In this study of over 3000 people with IBD, those with more disease activity, depression, female gender, a history of smoking, or those currently taking corticosteroids or narcotics were more likely to have sleep disturbance. Of people with Crohn's disease who were in remission at the beginning of the study, those with sleep disturbance were twice as likely to have a flare in 6 months. No effect was seen for ulcerative colitis. These results suggest that sleep is important for maintaining remission in IBD.
Full Published Manuscript
active disease; sleep; flare; risk; prevention; Crohn’s Disease; Crohn's; CD; Ulcerative Colitis; UC; colitis