Research Ideas  

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Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

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!

Published Studies

Year Publication Categories
2018
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases

Summary

Children and teenagers with Inflammatory Bowel Disease (IBD) are at increased risk of being unhappy with their body image. This study aimed to learn more about how common body image dissatisfaction (or “BID”) is among these children and teenagers and to see if we could point to any risk factors for having BID. A total of 664 participants in the IBD Partners Kids & Teens study, ages 9-18, completed an online survey about anxiety, depression, disease activity, and quality of life. We found that about 3% of participants met the criteria for having BID by selecting the answer choices “I look awful” or “I look bad” when asked about their appearance. Young patients with BID tended to have worse disease, to be taking steroids, to be female, and to be diagnosed at an older age. These participants were also much more anxious and depressed than those who were satisfied with their appearance. Pediatric patients with BID should discuss these concerns with their physicians and healthcare teams.


Full Scientific Abstract

Keywords
body image; body image dissatisfaction; BID, anxiety; depression; mood disorder; psychosocial; pediatric; children; kids; K&T; kids & teens; IBD Partners Kids & Teens

Lifestyle, Health Maintenance, Mental Health
2017
Symptom Clusters in Adults with Inflammatory Bowel Disease

Summary

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.
In this study, we used the CCFA Partners Cohort and the symptoms of pain interference, fatigue, sleep disturbance, anxiety, and depression. There were 5,296 participants with an average age of 44 years, and the sample was 72% female. We discovered four symptom cluster groups. The first group was labeled “low symptom burden” (26%), and this group had symptoms of pain, fatigue, sleep disturbance, depression, and anxiety. The second, and largest group (38%) was labeled “high symptom burden,” and included pain, fatigue, sleep disturbance, depression, and anxiety. The third group included 22.09% of participants, was labeled “physical symptoms,” and had the symptoms of pain, fatigue, and sleep disturbance. The fourth group “psychological symptoms,” was the smallest group at 14.22%, and included the symptoms of anxiety and depression. Being female, having a history of smoking, currently taking corticosteroids, Crohn’s disease, and active disease state were associated with belonging to the high symptom burden group compared to the low symptom burden group. Additional research is needed to test strategies that may be effective at reducing symptoms in people with IBD.


Full Scientific Manuscript

Keywords
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
2016
Infertility Care Among Men and Women With Inflammatory Bowel Diseases in the CCFA Partners Cohort

Summary

We studied how often women and men with inflammatory bowel disease (IBD) seek care for infertility (problems getting pregnant). We also looked at reasons why individuals had trouble getting pregnant. A total of 12.5% of women in CCFA Partners went to see a doctor for problems getting pregnant. This was a little higher in women with Crohn’s disease (14.1%) than in women with ulcerative colitis (9.5%). Risk factors for needing help getting pregnant were: prior GI surgery and older age. The most common cause of fertility problems in women was blocked fallopian tubes. For men, 8.7% needed help with fertility. Age was a risk factor. The most common cause of fertility problems was a problem with their female partner. Nearly 80% of women and men who went to the doctor for fertility problems were able to get pregnant. These rates of pregnancy with fertility treatment are similar to those of people without IBD.


Full Scientific Abstract

Keywords
infertility; pregnancy; sexual health; infertile; sexual function

Health Maintenance
2016
Menopause and Hormone Replacement Therapy in Women with Inflammatory Bowel Diseases in CCFA Partners

Summary

Women with inflammatory bowel disease, or IBD, frequently experience changes in abdominal symptoms (e.g. bowel frequency and pain) in relation to the different stages of the menstrual cycle. This may be related to the hormonal changes during the various stages of the cycle. Menopause is the state when the menstrual cycles and associated hormonal fluctuations stop permanently. This can occur naturally in relation to age or can be secondary to surgery or medical therapy that impact the reproductive organs. The impact of menopause on disease activity of patients with IBD is unknown. We assessed the disease characteristics of menopausal women within the CCFA Partners network. We also evaluated the impact of menopause and hormone replacement therapy, or HRT, on disease activity. A total of 2252 women were included in this study. Of these, 799 indicated that they had gone through menopause. The majority of post-menopausal women reported natural menopause with an average age of 50 in both Crohn's disease and ulcerative colitis patients. About half the post-menopausal women indicated a current or prior use of HRT. The post-menopausal state was associated with increased disease activity in both Crohn's disease and ulcerative colitis patients. This association was more prominent for women at age = 45 compared to those older than 45 years. Interestingly, the use of HRT did not impact disease activity at any age. Those findings suggest that the cessation of hormonal fluctuation in post-menopausal women as well as the age play role in predicting disease activity in women with IBD.


Full Scientific Abstract

Keywords
female; feminine; women’s health; women; menopause; hormone; hormonal influence; hormonal fluctuation; Hormone Replacement Therapy; HRT

Lifestyle, Mental Health
2013
Sleep Disturbance and Risk of Active Disease in Patients With Crohn's Disease and Ulcerative Colitis

Summary

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

Keywords
active disease; sleep; flare; risk; prevention; Crohn’s Disease; Crohn's; CD; Ulcerative Colitis; UC; colitis

Lifestyle
2013
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD

Summary

After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.


Full Scientific Abstract

Keywords
kids & teens; K&T; pediatric; age; kids; teens; community; population; resource

Research Methods, Study Updates
2013
Symptom Worsening During Pregnancy and Lactation is Associated with Age, Body Mass Index, and Disease Phenotype in Women with Inflammatory Bowel Disease

Summary

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

Keywords
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

Lifestyle
2013
Inflammatory Bowel Disease Symptom Severity is Influenced by Hormone Fluctuations in Many Women with IBD

Summary

In a study of over 1200 females with inflammatory bowel disease, or IBD, more than half reported worsening disease symptoms during menstrual periods. Women who reported worse symptoms during menses were younger than those who did not. About 10% said that hormonal contraceptive agents improved their symptoms, but about 8% said that hormonal contraceptive agents made their symptoms worse. Among women who had reached menopause, an older age of IBD onset was associated with worse symptoms after menopause. This study shows that symptom severity is influenced during times of hormone changes in many women with IBD and that duration of IBD may play a role in hormonally mediated symptoms.


Full Scientific Abstract

Keywords
hormone; hormonal; women; women’s health; female; feminine; hormone influence; hormone fluctuation; ovulation; menarche; menses; menopause; age; active disease flare; risk; community; population

Lifestyle

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