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
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
Obesity Is Associated with Worse Disease Activity in Patients with Inflammatory Bowel Diseases: an Internet Based Cohort Study

Summary

More than 1/3 of adults in the US are obese and the rates of obesity are increasing. However, relatively little is known about the prevalence of obesity in patients with inflammatory bowel disease (IBD) or the impact of obesity on IBD disease activity. In this study, we reviewed patients in the CCFA Partners database to better understand these issues. We found that approximately 30% of IBD patients were overweight and an additional 20% were obese. Patients who were overweight or obese were less likely to have their IBD in remission at baseline. We also found that patients who were obese (but not overweight patients) were more likely to have a relapse of their IBD within 6-12 months compared to normal weight patients. In summary, obesity appears to be relatively common amongst patients with IBD and may be a risk factor for worsened disease.


Full Scientific Abstract

Keywords
comorbidity; obese; obesity; overweight; nutrition; patient reported outcomes

Study Updates, Lifestyle
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
Keep or Destroy? Attitudes of Patients With Inflammatory Bowel Diseases on Biospecimen Handling at Biobank Closure

Summary

A biobank is a collection of samples from patients (including spit, stool or blood). Biobanks are important for understanding risk factors for developing disease or for severity of disease. The purpose of this study was to understand how patients with inflammatory bowel diseases (IBD) feel about the continued use of their samples after the biobank has closed. A total of 26 CCFA Partners members participated in a phone interview about the risks and benefits of their samples being used for research, and the results of these conversations were used to create a survey. The survey included three primary themes: 1) degree to which samples remain an individual’s property after donation; 2) samples are a good that can be sold; and 3) the belief that results from sample analysis could lead to discrimination. About 1,000 CCFA Partners participants completed the survey online. Most participants expressed the desire to know what would happen to their samples and genetic information if the biobank closed. Most were comfortable with the samples and genetic information being destroyed. Most were also comfortable donating their samples and genetic information to IBD research. Most participants were not comfortable with selling their samples and genetic information after the biobank closes. We learned that it is important for researchers to create a plan for samples if the biobank closes and to communicate this plan to the participant at the beginning of the study.


Full Scientific Abstract

Keywords
biospecimen; biobank; biobanking; specimen; biospecimen handling; consent; informed consent; genetic testing

Research Methods
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
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
2012
An Update on the CCFA Partners Internet Cohort Study

Summary

As of August 2012, nearly 12000 patients have enrolled in CCFA Partners, and about half completed at least one follow-up study, which are released every 6 months. The CCFA Partners project currently includes 9 additional studies from external investigators. Two validation studies and a DNA collection pilot project are also underway.


Full Scientific Abstract

Keywords
cohort; education; preventive intervention; prevention; intervention; community; population; outreach; resource

Research Methods, Study Updates

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