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!
Can a history of taking a lot of antibiotics result in wiping out your good gut bacteria and lead to IBD? Can probiitics or stool transplants protect from getting IBD or treat IBD?
Over prescribing of antibiotics starting in childhood has been a documented problem. If this could be contributing to the incidence of IBD, that would be important to know as a further deterrent. Also knowing what to do for patients who have no choice but to take a lot of antibiotics would be helpful. And if this is a subtype of causality, it could be specifically targeted for prevention and treatment.
In light of recent data from Partners showing a link between depression and a subsequent flare, im curious how many patients seek/receive treatment so as to minimize the risk of a flare. For those that don't, I wonder why and what barriers might impact access to care.
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?
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.
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.
Since the increase in Humira dosage from 40mg 2x month to 40mg weekly, i experience significant motion sickness while driving and flying. Has this been reported by any other users?
Understanding undocumented side effects is important for long term users of Humira, as well as, for new users . Side effects such as motiin sickness can cause impaired driving and be frightening when it's not anticipated