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
High Patient Activation Is Associated With Remission in Patients With Inflammatory Bowel Disease

Summary

Research has shown that patients with chronic diseases have better health outcomes if they are knowledgeable, skilled and confident in managing their disease. In this study, researchers wanted to find out if this is true for patients with IBD. To evaluate this, they delivered a survey called the Patient Activation Measure to 1,486 patients with IBD. Based on this survey, patients are placed on one of four levels. The lowest level is Level 1, “disengaged and overwhelmed.” The highest level is Level 4, “maintaining behaviors and pushing further.” Follow-up data available for 1082 survey participants (73%) showed that patients with high activation (levels 3 or 4) were more likely than those with low activation (levels 1 or 2) to be in clinical remission 6-12 months after the initial survey assessment.


Full Scientific Manuscript

Keywords
patient activation; PAM; Patient Activation Measure; surgery; Crohn’s disease; CD; ulcerative colitis; UC; remission

Lifestyle, Health Maintenance
2018
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease

Summary

There has been growing interest in the use of social media for managing chronic illnesses. Few studies have examined how patients with Inflammatory Bowel Disease utilizes social media as a tool for managing their health. In this study we surveyed patients in Crohn’s and Colitis Foundation partner’s database to get a better understandings of patient’s preferences for social media usage. We found that 32% of IBD patients utilized social media for disease management. We also found that the majority of patients were unsure of the quality of IBD related information posted on social media and most agree d that the quality could be improved if the Crohn’s and Colitis Foundation contributed to posts. The leading concerns surrounding social media use were privacy/confidentially and lack of trust of information posted. In summary, IBD patients expressed interest in utilizing social media to aid in the management of their disease, though lack of knowledge about quality exists as do concerns about the privacy/confidentially of posts.


Full Scientific Manuscript

Keywords
social media; digital health

Lifestyle
2018
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network

Summary

Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants’ experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN.


Full Scientific Manuscript

Keywords
PPRN; Disease management; Online resources

Lifestyle, Health Maintenance, Research Methods
2018
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases

Summary

IBD commonly affects men and women during their reproductive ages. Because of this, researchers are interested in knowing how the disease affects fertility and pregnancy. Much research on the impact of IBD on fertility and pregnancy has focused on women, but for this study, researchers focused on men. They wanted to know how men’s IBD and their use of IBD medication affect reproductive outcomes. The study results showed that men who received a diagnosis of IBD before trying to conceive were more likely to have difficulty conceiving than men who developed IBD after conceiving. However, these fi ndings were noted only in those with recently active disease within the past 6 months. Men with IBD who were in long-term remission were similar to the rates prior to development of IBD. Exposure to any of the medications for treating IBD was not associated with congenital anomalies, low birth weight or preterm births.


Full Scientific Manuscript

Keywords
paternal; disease activity; men; fertility; pregnancy

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
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
2016
Association Between Affective-Cognitive Symptoms of Depression and Exacerbation of Crohn's Disease

Summary

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

Keywords
depression; comorbidity; Crohn’s disease; Crohn’s; CD

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
2014
Prevalence of a Gluten-free Diet and Improvement of Clinical Symptoms in Patients with Inflammatory Bowel Diseases

Summary

Patients with celiac disease (an autoimmune disorder where eating gluten can damage the small intestine) benefit from a gluten free diet (GFD). Few data are available to tell us if patients with inflammatory bowel diseases (IBD) may also benefit from this diet. Individuals with GI symptoms such as bloating, abdominal pain, diarrhea, fatigue and nausea can have non-celiac gluten sensitivity, for which a GFD can be beneficial. Non-celiac gluten sensitivity can also co-exist with IBD. We therefore asked patients enrolled in CCFA Partners whether they have ever tried a gluten free diet (GFD), whether they followed this diet closely, and whether it helped with any symptoms. A total of 1647 people took the survey on GFD. A total of 314 (19.1%) reported that they had ever tried a GFD and 135 (8.1%) were currently following the diet. Overall, 206/314 (65.6%) trying a GFD reported improvement in any GI symptom while on this diet. Over a 1/3 of people (38.3%) felt that they experienced fewer or less severe flares while on the diet. Improvements in clinical symptoms were reported for bloating (56.5%), diarrhea (42.6%), abdominal pain (41.5%), fatigue (27.5%), and nausea (26.3%) while on a GFD. Fatigue was significantly improved with excellent adherence to the diet. Because many patients had improved symptoms on the GFD, it is possible that patients with IBD could suffer from non-celiac gluten sensitivity. Fewer people who felt better on a GFD were taking biologics medications, suggesting that flare symptoms in those with more severe disease may not respond to a GFD. Future studies are needed to understand the benefits of this diet in IBD patients, and the mechanism of improvement with this dietary intervention.


Full Published Manuscript

Keywords
Gluten Free Diet; GFD; flare; active disease; risk; prevention

Diet, Lifestyle, Alternative Therapies, Health Maintenance
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
2012
Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease.

Summary

People with inflammatory bowel disease, or IBD, often say that specific foods make their symptoms better or worse, but there is no good scientific evidence to support a specific diet. In this study, nearly 7,000 patients with Crohn's disease or ulcerative completed a survey about the their diet and IBD symptoms. Yogurt and rice were most often reported to improve symptoms. Vegetables, fruit, spicy foods, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high fiber foods, fatty foods, seeds, coffee and beans were most frequently reported to worsen symptoms. In general, patients with ulcerative colitis ate more fruit, vegetables, beans and popcorn than patients with Crohn's disease. Crohn's disease patients with an ostomy tended to eat more cheese, sweetened beverages, milk, pizza and processed meats than Crohn's disease without an ostomy.


Full Published Manuscript

Keywords
active disease; flare; prevention; risk

Diet, Lifestyle, Alternative Therapies
2011
Quality of Life in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

In a survey of over 7000 patient with Crohn's disease or ulcerative colitis, patients had about the same quality of life for both diseases. Patients with severe ulcerative colitis had low quality of life, but quality of life returned to around average when patients had surgery to remove their colon and replace it with an internal pouch. These results show that status of inflammatory bowel disease can be an important factor in quality of life.


Full Scientific Abstract

Keywords
quality of life; community; population

Research Methods, Lifestyle

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