In this area you will be able to:
- Propose, vote on, and discuss research ideas
- View current studies
- View published research
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!
How does a patient's communication with their physician impact their quality of care? What communication techniques can be implemented in order to improve the patient-physician relationship?
Many patients find it difficult to talk to their physicians, this can prevent their doctors from knowing the full picture and may increase incorrect diagnoses or delay the diagnosis. Uncontrolled disease can be harder to control and controlling it correctly from the onset is crucial in disease management.
Are longer wait periods for doctor appointments associated with increased risk of emergency rooms visits and/or hospitalizations? Does it result in increased use of steroids and/or antibiotics?
I've experienced a huge variability between different doctors/clinics in their ability to fit me in for appointments when requested. I suspect that when doctors have appointment wait lists that exceed a month, it increases the risk of a patient requiring emergency care or hospitalization and it increases the likelihood that patient's will use more steroids and/or antibiotics. Studying this effect may help identify an unmet need for better patient triage services at the doctors office.
The physical "stress" of getting too little sleep (less than 6 or 7 hours per night) exacerbates my symptoms. This is a phenomenon I have observed over the last 30+ years. Unfortunately, I also have 3 sleep disorders. Therefore, despite the medications I take, I can't tell whether I've had good quality sleep even when I sleep 8 or more hours. Do patients who don't respond well to Crohn's treatments have undiagnosed sleep disorders?
Research tends to focus on negative emotional state (depression) and the potential downside. Work by Dr B. Fredrickson shows positive emotions can provide favorable health impact and has developed a simple on line tool to measure positive emotions which could be incorporated into this site to do research going forward.
Can fistulae (particularly perineal/perianal) be caused by holding in BMs for long stretches of time? Specifically, is this occurring in children and teens with IBD?
I had diarrhea from age 11 (1971) without a diagnosis until 1978 when I had a perineal abscess drained by a gynecologist in the hospital. I could see that it was a fistula (dad had medical books around the house). About a week later, while on Cleocin and Keflex, my colon perforated and I almost died before expl lap and temporary colostomy to "rest" my gut. I'd had 7 years of public school, holding in the stool all day, until I could get home. I was not comfortable having diarrhea at school, either because of complaints from kids or smokers who dominated the bathrooms.
I believe there must be something - ala 'post polio syndrome'. There are no explanations (or treatment, except for partial symptom relief) for what is happening to me. I believe there must be some connection, likely through auto-immune issues, perhaps related to the bowel surgery I had - which supposedly 'cured' me. I cannot be the only survivor experiencing these things.
I propose to look at the incidence of periodontal disease in IBD patients, and to examine if there is any correlation to the disease itself, or to medications used for disease control.
Anecdotally, there seems to be a positive correlation; however, hard data seems non-existent. With the known relationship between periodontal disease and heart disease, it would be important for IBD patients to know if this is an issue they need to stay on top of.
Why is Crohn's disease being diagnosed so much more frequently in the past 2-5 years? Is it better diagnostics and understanding of the disease or that more drugs are being made to treat it?
To the lay person with IBD, especially those of us diagnosed with UC 10, 15, 20 years ago, so many of us are now being told we may have Crohn's and going through more testing to identify is that is so. It is also interesting that the heading "IBD" seems to more often refer only to Crohn's. It's as if those of us with a UC diagnosis are the ugly step-sister swept into a corner. And I have to wonder if there is as much research going on for UC as for Crohn's.
Examine the relation of Vitamin D deficiency possible contributing cause to IBD, beyond simple correlative data. Specifically Vit D involvement in immune development.
There is a well known increase in IBD in more western nations as well as higher latitudes. With most Western societies spending large amounts of time indoors at home, in cars, and at their employment, it's easy to see a causitive relation to decreased vitamin D in these populations. The increased latitude of Canada and Nordic countries also contributes low vitamin D levels in general population. Both of these population groups (Western Urban, and High latitudes) have increased incidence of IBD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/ Provides a simple primer on Vit D relation to immune system development and maintenance; as well is it's deficiency in a host of autoimmune disorders. I would like to see a multi arm study along the following investigation paths: 1) Vit D testing for newly diagnosed. Followed by surveillance testing throughout treatment w/ and w/o vit supplementation arms. 2) Genetic testing for IBD markers/alleles in relation to Vit D levels (i.e. is the deficiency related to turning "on" various epigenetic and genetic markers that are present in active IBD). 3) Genetic testing of IBD markers, Vit D testing, and Gut microflora testing of non-active/IBD free family members for comparison of gene expression and interdependence between these factors, possibly prospective following of same patients if diagnosed offspring.
Compare medications taken (and other medical conditions experienced) by IBD patients BEFORE symptoms of IBD began to greater understand causes of the disease.
Prevention is the best medicine!