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!
Patient-Reported Outcomes and Quality of Life in Patients with Ileal Pouch-Anal Anastomosis (IPAA)
Between 20-35% of patients with ulcerative colitis (UC) have had a colectomy (surgery to remove part or all of the large intestine). The most common type of colectomy is called a “restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA)”. This is a surgery to remove the large intestine and rectum and to create a small pouch out of the small intestine that is connected to the anus. This pouch is used to store stool and is often called a “J-pouch” (It is shaped like the letter “J”). Pouchitis (inflammation of the pouch) is the most common complication of this type of surgery and consists of symptoms of diarrhea and urgency. In this study, we wanted to know how many CCFA Partners participants have experienced pouchitis and what medications and characteristics are common among this group. To answer these questions we looked at survey responses submitted by more than 15,000 CCFA Partners participants. We found that 248 patients reported having an IPAA at some point in time. Of these patients, 82% also reported at least one episode of pouchitis. Patients with a history of pouchitis were more likely to use antibiotics. Patients who reported a recent episode of pouchitis (within the past six months) were more likely to report worse quality of life, depression, fatigue, and dissatisfaction with their social role. The majority of patients who have had a colectomy develop pouchitis at some point. During episodes of pouchitis, patients experience worse quality of life.
Full Scientific Abstract
IPAA; Ileal Pouch Anal Anastamosis
|Lifestyle; Surgery; Medication|
Association Between Affective-Cognitive Symptoms of Depression and Exacerbation of Crohn's Disease
Depression is common among patients with Crohn’s disease (CD). In this study, we wanted to understand if CD patients in remission who reported symptoms of depression were more likely to experience worsened CD symptoms later in time. To answer this question we looked at responses to CCFA Partners survey questions submitted by more than 2,000 CD patients about negative mood (I felt depressed), negative beliefs about the self (I felt worthless, I felt hopeless), and decreased life engagement/negativity (I felt hopeless) during the past seven days. Twelve months later, we asked about the severity of their CD activity using a standard CD questionnaire about diarrhea, pain, and well-being. We found that symptoms of depression predicted CD activity a year later. In other words, CD patients who were depressed were more likely to have CD symptoms a year later than those who were not depressed.
Full Published Manuscript
depression; comorbidity; Crohn’s disease; Crohn’s; CD
|Lifestyle, Mental Health|
Symptom Worsening During Pregnancy and Lactation is Associated with Age, Body Mass Index, and Disease Phenotype in Women with Inflammatory Bowel Disease
In a study of over 300 women with inflammatory bowel disease who reported at least one pregnancy after their IBD diagnosis, more than half reported that their disease symptoms improved during pregnancy, while about 20% said that their disease symptoms were worse during pregnancy. Younger women and women with ulcerative colitis were more likely to have increased disease symptoms during pregnancy. Of the nearly 200 women who breastfed, 14% said that symptoms improved, 13% said symptoms got worse and about 40% said their symptoms did not change during breastfeeding Those with worsening symptoms during breastfeeding were younger and had a lower body mass index than those whose symptoms remained the same or improved.
Full Scientific Abstract
community; population; pregnancy; hormone; hormonal; hormone influence; hormone fluctuation; lactation; age; BMI Disease phenotype; BMI; phenotype; flare; active disease; risk; women; women’s health; female; feminine; symptom