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
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
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
2017
Patients in Remission are more Likely to Demonstrate High Patient Activation in a Large Internet-Based Cohort of Patients with Inflammatory Bowel Disease

Summary

There has been a recent expansion of both medical and surgical options for the treatment of ulcerative colitis (UC) and Crohn’s disease (CD). With these new options comes an increased recognition of the patient’s critical role in the decision making process. The concept of patient activation has also continued to develop in recent years. Patient activation is defined as a patient’s willingness to manage his or her own health care. High levels of patient activation are achieved when patients understand their role in treatment decisions and have the knowledge and skills to manage their care. We used the Patient Activation Measure (PAM, ® Insignia Health) to assess levels of patient activation among about 1,500 participants in CCFA Partners. We found that participants who completed college had higher levels of patient activation. Participants with a history of inflammatory bowel disease-related surgery also had higher levels of patient activation. Additionally, patients with higher activation were more likely to be in clinical remission in both CD and UC. This finding suggests that patient activation may be an important driver of outcomes among patients with CD and UC.


Full Scientific Abstract

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

Study Updates
2016
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Subjects with Inflammatory Bowel Diseases

Summary

Patient reported outcomes (PROs) are important measures of how well treatments work in inflammatory bowel disease (IBD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a scale for measuring PROs for physical, mental, and social health. A gastrointestinal (GI) PROMIS scale was recently developed based on responses from people across the United States. The GI PROMIS scale includes questions about eight common GI symptoms: gas, reflux, diarrhea, soilage, constipation, belly pain, nausea and vomiting, and difficulty swallowing. We studied these questions in 2,378 people with Crohn’s disease (CD) and 1,455 people with ulcerative colitis (UC) in CCFA Partners. About half of the participants reported being in remission. Compared to participants in remission, those with active CD reported worse symptoms on the GI-PROMIS scale for all symptoms. The same was true for participants with active UC with the exception of difficulty swallowing. Participants with worse quality of life reported worse symptoms on the GI-PROMIS scale for all symptoms. Participants with more diarrhea, belly pain, and gas reported poorer mental and social PROs. In summary, participants who reported worse GI-PROMIS symptoms also reported worse qualify of life, disease activity, and mental and social outcomes. These results suggest that the GI-PROMIS scales could be an important way to measure symptoms in the future.


Full Scientific Abstract

Keywords
patient reported outcomes; IBD; quality of life; GI-PROMIS; psychosocial symptoms

Research Methods
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
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Patients with Crohn's Disease in CCFA Partners

Summary

Patient reported outcomes (PROs) are important measures of how well treatment works in Crohn’s disease (CD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a new scale for measuring PROs for physical, mental and social health. The results can be compared to those from people that don’t have IBD. A gastrointestinal (GI) PROMIS scale was recently developed. The GI scales were not studied in large numbers of Crohn’s patients, but were studied in people all across the United States. We studied these questions in 1839 people with Crohn’s disease in CCFA Partners. Most (75%) were women. People with Crohn’s disease reported more fatigue, anxiety and pain compared to people without Crohn’s disease. People with Crohn’s disease reported less reflux, problems swallowing and constipation than people without Crohn’s disease. Other GI symptoms for people with Crohn’s disease were similar to those reported by people without Crohn’s disease. Compared to people in remission, people with active CD reported worse symptoms on the GI-PROMIS scales for all symptoms except problems swallowing and constipation. Those with a worse quality of life, as measured by the Short IBD Questionnaire (SIBDQ), reported worse symptoms on the GI-PROMIS scales all symptoms. People who reported more nausea, diarrhea, gas/bloat and abdominal pain reported more psychosocial symptoms on the PROMIS scales. In summary, those with worse symptoms on the GI-PROMIS scales scored worse disease activity scales, quality of life scales and more symptoms of depression and anxiety. These scales could be important ways to measure symptoms in the future.


Full Scientific Abstract

Keywords
Patient reported outcomes; PROs; PROMIS; survey instruments; Crohn’s disease; CD

Research Methods, Health Maintenance
2016
Variation in Care of Inflammatory Bowel Diseases Patients in CCFA Partners: Role of Gastroenterologist Practice Setting in Disease Outcomes and Quality Process Measures

Summary

Variation in care of patients with Crohn’s disease (CD) and ulcerative colitis (UC) has been used as a marker for quality differences. We studied whether important aspects of IBD patients’ care in CCFA Partners varied based on where their GI doctor was in practice. We compared patients who saw an academic (university) GI physician, a private practice GI physician, or other GI physician (such as a Veteran’s Affairs physician). The study included about 12,000 IBD patients. Almost 95% reported visiting a GI provider at least once a year: about 74% saw a private practice physician, 15% academic, and 11% other. Those patients with CD seen by academic physicians were younger, has completed higher education, used less mesalamine medications, and used more biologics and immunomodulators. They were more likely to be in remission, were more likely to get a flu shot, smoked less, and were less likely to be on steroids when compared to private or other physicians. Patients with UC seen by academic providers were younger, had more hospitalizations and surgery, with greater biologic and immunomodulator use. There was no difference in steroid use, and no differences in any of the other measures like remission rates, flu shot, quality of life. In summary, there was much more variation in CD care as compared to UC care, with improved outcomes for CD patients seen by academic providers. Studying why this is the case, could help us to improve the quality of care delivered to all IBD patients.


Full Scientific Manuscript

Keywords
healthcare setting; quality of care; remission; gastroenterologist; quality of life; QOL; medications; Crohn’s disease; Crohn’s; CD; ulcerative colitis; UC; colitis

Health Maintenance, Environment, Medications
2016
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease

Summary

Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll.

In the OSCCAR cohort, 243 of the 320 participants consented to join the CCFA-Partners cohort. However, only 44 participants completed enrollment in CCFA-Partners. OSCCAR participants who completed enrollment were better educated than those who did not complete enrollment. In the SHARE cohort, 436 participants completed enrolment in CCFA-Partners. SHARE participants who completed enrollment were more often women and white. If they had Crohn’s disease, those who completed enrollment had fewer disease symptoms and if they had ulcerative colitis, those who completed enrollment had less extensive disease. Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand opportunities for research. Although linkage is possible, participant’s willingness to complete the linkage is the limiting factor. Asking participants in a traditional cohort at the time of enrollment may be a way of maximizing linkage to CCFA-Partners.


Full Published Manuscript

Keywords
cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health

Research Methods, Study Updates, Health Maintenance
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
Avoidance of Fiber is Associated with Greater Risk of Crohn's Disease Flare in a 6 Month Period

Summary

Dietary fiber is found in plant foods such as fruits, veggies, and whole grains. Past studies found that dietary fiber can affect bacterial colonies in your stomach and intestines. However, there is limited information about how dietary fiber affects inflammatory bowel disease (IBD) symptoms. In this study, we looked at fiber consumption and whether it was associated with flares in adults with IBD. A total of 1619 participants in CCFA Partners completed a diet survey and a follow-up survey 6 months later. We found that participants with Crohn’s disease who reported eating the most fiber were less likely to have a flare within a 6 month period. In addition, participants with Crohn’s disease who told us they did not avoid high fiber foods were about 40% less likely to have a flare than participants who told us they avoid high fiber foods. Interestingly, we did not find an association between fiber consumption and disease flares among participants with ulcerative colitis. In summary, eating foods high in fiber may help reduce risk of flares among patients with Crohn’s disease.


Full Published Manuscript

Keywords
active disease; fiber; flare; prevention; risk; Crohn’s disease; Crohn’s; CD

Diet, Alternative Therapies, Lifestyle, Health Maintenance
2015
Exercise Decreases Risk of Future Active Disease in Patients with Inflammatory Bowel Disease in Remission

Summary

Little is known about how exercise impacts disease activity in patients with inflammatory bowel disease (IBD). This study explored the relationship between exercise level and disease activity in a large group of patients with IBD in remission. A total of 1,857 patients from the CCFA Partners cohort participated by answering online questions about their exercise level and disease activity at the beginning of the study (in remission) and then again after six-months. We found that participants with Crohn’s disease who reported higher levels of exercise at the beginning of the study were significantly less likely to report active disease six-months later. We also found this association among participants with ulcerative colitis (UC) and indeterminate colitis (IC), but the results were not significant. Results of this study suggest that for patients with Crohn’s disease (and possibly for patients with UC and IC) who are in remission, higher levels of exercise may reduce the risk of developing active disease in the short-term.


Full Published Manuscript

Keywords
active disease; flare; prevention; risk

Exercise, Lifestyle, Alternative Therapies, Health Maintenance
2014
Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking in the CCFA Partners Cohort

Summary

A biobank is a collection of samples from patients (including spit, stool or blood). Biobanks are very important for understanding risk factors for developing disease or for severity of disease. We wanted to understand more about why patients with inflammatory bowel disease (IBD) would or would not participate in a biobank. We first did a series of interviews over the phone with patients who were participating in the CCFA Partners study. This helped us to understand the important concerns about biobanks and develop a survey for use in CCFA Partners. We then sent a survey to over 800 people with IBD in CCFA Partners. We did a total of 26 phone interviews. Patients doing the interviews told us that they had concerns about how samples would be collected/stored; who would be allowed access; whether these samples would be used for other things (not only research); and whether this would affect whether they could get life insurance. Most people were not that worried about using the blood for genetic studies. People thought that that biobanks were important for research, that they might lead to a cure; that by donating they would be helping others or family members with IBD; and hoped that they might personally benefit, although most understood that they likely would not. These themes aided in the development of a survey instrument to assess perceptions of biobanking. A total of 476 people initially finished the survey. Almost 40% said that they would 'definitely yes' donate samples, 56.0% would 'probably yes' donate, 5.1% 'probably no' and 0.7% 'definitely no'. There were no factors that made someone more likely to donate (reported donation rates were not different for Crohn's disease (CD) versus ulcerative colitis (UC), remission versus active disease, or education level. People were most willing to donate spit, followed by blood and lastly stool. Knowing these important thoughts on sample donation/biobanks will help researchers to develop consents for IBD biobanks and design educational materials on biobanks for IBD A biobank is a collection of biological samples, such as saliva, blood, and stool, from individuals with a common condition such as inflammatory bowel disease (IBD). Biobanks are important for understanding risk factors for developing disease or for severity of disease. We wanted to learn more about IBD patients’ understanding of and willingness to participate in a biobank. We first did 26 phone interviews with patient volunteers participating in the CCFA Partners study. Those interviews helped us better understand concerns related to biobanks. Patients doing the interviews told us that they had concerns about how samples would be collected/stored, who would be allowed access, whether these samples would be used for anything other than research, and whether participation in a biobank would affect life insurance eligibility. Most patients were not that worried about using blood for genetic studies. Participants thought biobanks were important for research, that they might lead to a cure, that by donating they would be helping others or family members with IBD, and hoped that they might personally benefit. These results from the phone interviews were used to develop an online survey instrument to assess perceptions of biobanking. In a larger sample, a total of 1,007 people with IBD completed the online survey. Almost 40% said they would ‘definitely’ donate samples, 56.4% would ‘probably’ donate, 3.6% ‘probably not’, and 0.6% ‘definitely not’. There were no differences in willingness to donate specimens based on disease type (Crohn’s vs. ulcerative colitis) or on disease activity (in remission vs. currently active disease). People were most willing to donate saliva specimens, followed by blood and lastly stool samples. Knowing these important attitudes and beliefs about sample donations and biobanks will help researchers develop consents and educational materials related to biobanks that will encourage wider involvement.


Full Published Manuscript

Keywords
biobanking; sample collection; sample storage, confidentiality; HIPAA; community; population

Research Methods, Study Updates
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

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Food And Crohn’s Exacerbation Study (FACES)

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Defining the Genetic Architecture of Crohn’s Disease in the Ashkenazi Jewish Population

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