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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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 |
---|---|---|
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 |
2012 |
Development of an Internet-Based Cohort of Patients with Inflammatory Bowel Diseases (CCFA Partners): Methodology and Initial Results
Summary This manuscript describes the creation of CCFA Partners and the first 7,819 participants. Of the people who took the first surveys, 72% were women, the median age was 42 years, 63% had Crohn's disease, 34% had ulcerative colitis and 3% had other IBD. CCFA Partners is a unique resource to study patient outcomes and satisfaction, quality of care and changes in disease management over time. Full Published Manuscript Keywords community; population; resource; outreach |
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 |