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!
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.
The prevelance of careeganan in the diets of those who have developed Colitis / chrones. Secondly how foods with this present effects the prevelance of associated symptoms
The current research around careeganan shows that this is harmful and damages the body in the way colitis and chrons presents itself. If this information is not widely known people continue to expose themselves to harmful foods.
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.
Researching IBD symptom of fatigue and low energy: normal diet arm vs. supplement arm (Vitamins D3 and B12, and Fish Oil.)
There are many health benefits of being on a plant based diet. However, veganism can be associated with low levels of vitamins D3 and B12. Such as study would determine comprehensive care for patients considering their energy levels, diet, and supplement intake.
There is a significant population of patients for whom biologics are no longer a viable or recommended treatment. Our healthcare going forward is complicated by the permanent effects of these medications on the body's systems.
Does the human microbiome affect the development of mastocytic enterocolitis in patients with inflammatory bowel disease?
My gastroenterologist and primary care doctor both suggest that they are seeing an increased number patients with IBD and mast cell colitis. As mastocytic enterocolitis is a relatively new diagnosis, there doesn't seem to be much information about causation yet.
How many IBD patients have ever been referred for counseling or offered an antidepressant by their gastroenterologist?
Depression and anxiety levels are very high in this population. Extending care to the whole person would make sense in managing disease and quality of life.
J-pouch surgery, as a final effort to mitigate UC symptoms, can be life-changing. However, it seems that little information is available describing the long-term outlook for patients who have had the procedure. With an increase in IBD diagnoses in children, it is safe to assume that rates of J-pouch surgeries in children will also increase. A longitudinal study following J-pouch patients for several years following their surgeries should be conducted to highlight any common complications or symptoms that appear over the course of time. This research would be especially significant for better advising younger patients and their caregivers.
Divorce rates are high enough, but what happens in a relationship when severe disease and various (mood altering medications and conditions) factors make one partner the breadwinner and caretaker of a sick person. What does the sick partner do to maintain mental and marriage health. Include child rearing, family financial stability maintenance, sexual relationship, care giver "burnout" such as not feeling like spouses and partners any longer. Patient loss of roles and esteem. Post divorce, patient ability to survive alone having little to no ability to be financially stable, get housing, food, healthcare and mental support. How many marriages become mentally or physically abusive when there is an ill (IBD or multiple illness/complications) endangered?
Prevalence and impact of inflammatory bowel disease-irritable bowel syndrome (IBD-IBS) on patient reported outcomes in CCFA Partners
Infertility Care Among Men and Women With Inflammatory Bowel Diseases in the CCFA Partners Cohort