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
2020
Trends and Characteristics of Clinical Trials Participation for Inflammatory Bowel Disease in the United States: A Report From IBD Partners

Summary

Between 2011 and 2018, participation in randomized controlled trials (RCTs) for inflammatory bowel disease declined while available RCTs in-creased. Younger patients, patients in community settings, and patients with milder disease were underrepresented in RCTs. Nonparticipants had disease activity failing remission criteria, highlighting the role of RCT participation.


Full Scientific Manuscript

Keywords
Clinical; Trials; older; academic; medical center; severe; disease; sicker; vedolizumab; ustekinumab; tofacitinib; under; age; community; facilities; underrepresented; newest; therapies; free; medication; procedures; all patients have; opportunity

Research Methods, Alternative Therapies, Medications
2018
Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life

Summary

Little research has been done exploring how inflammatory bowel disease (IBD) affects sexual health. In this study, investigators asked a large group of IBD patients to complete a 6-question online survey. The questions asked about sexual interest and satisfaction. Researchers found that these IBD patients had similar levels of sexual interest as the general population, but they had lower sexual satisfaction and lower quality of life as it related to their IBD. Older age, disease activity, depression, anxiety, and pain were associated with these findings. Exploring these sexual health topics during clinical encounters can help improve IBD quality of life.


Full Scientific Manuscript

Keywords
Sexual dysfunctions; Physiological; Sexual health; Inflammatory bowel disease; Quality of life

Lifestyle, Health Maintenance
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
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
2015
Medication Utilization and the Impact of Continued Corticosteroid Use on Patient-Reported Outcomes in Elderly Patients with Inflammatory Bowel Disease

Summary

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

Keywords
geriatric; elderly; age; steroid; corticosteroid; drugs

Medications, 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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