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
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
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
2012
A Randomized Trial of Electronic (E-mail) Educational Prevention Messages within the CCFA Partners Cohort

Summary

It is recommended that patients with inflammatory bowel disease, or IBD, get an influenza, or "flu" vaccine every year. The flu vaccine is especially important for patients taking medication to suppress their immune system. This study showed that 1 in 3 IBD patients did not get a flu vaccine in 2011. Receiving an email reminder from the CCFA Partners program did not make patients more likely to get a flu vaccine.


Full Scientific Abstract

Keywords
education; preventive interventions; prevention; intervention; community; population; outreach

Research Methods, Study Updates
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
2011
Status of Prevention in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

Patients with inflammatory bowel disease, or IBD, may be more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use. Fortunately, there are simple activities that can prevent these from occurring. In a survey of over 7000 patients with IBD, only about half had a bone density scan or took calcium or vitamin D supplements to promote bone health. Only 40% reported having a skin exam and 16% reported always wearing sunscreen to prevent skin cancer. Less than two thirds had an influenza (flu) vaccine. These results show that not enough patients are doing simple activities to prevent weak bones, infections and cancers that may be related to IBD.


Full Scientific Abstract

Keywords
preventive; care; active disease; flare; prevention; risk; educational interventions; intervention; education; outreach; community; population

Research Methods, Health Maintenance
2011
Medication Adherence in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort

Summary

In a survey of over 7000 patients with inflammatory bowel disease, or IBD, more than half of all patients got a low score on medication adherence questions, which means that most patients are not taking their IBD medications correctly all of the time. In general, people felt better when they had a high medication adherence score. The researchers recommend educating patients to improve medication adherence.


Full Scientific Abstract

Keywords
relapse prevention; relapse; prevention; preventive; drugs; medication; adherence; compliance, educational interventions; education; outreach; community; population

Medications, Lifestyle

Active Studies VIEW ALL
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