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!
I've noticed on Twitter that there is a need of psychologists that understand how IBD can effect one's mental state of being.
Anyone with a disease can tell you that high stress environments make symptoms worse and relaxation techniques often help. It has also been shown, primarily in animal studies, that "stress hormones" like cortisol or changes at in epigenes have severe repercussions across the body. Can managing these help control symptoms or remission?
Do patients have better control of their disease when they communicate with other patients (via support groups, camps, online forums, etc)?
Support groups can be a great opportunity to learn more about the disease from the experience of others. They can be a resource of both good and poor advice. I suspect the overall impact of patient peer support is positive of disease management.
Has your inflammatory bowel disease diagnosis (and/or associated symptoms) influenced your preferred location of employment (home-based vs outside the home)?
I think it is important to consider how lifestyle changes influence the progression of IBD. Some diagnosed individuals may seek out jobs that allow them to work from home when symptomatic. This change in lifestyle itself may impact the progression of IBD in ways we don't yet understand. This question is increasingly important as the number of home-based employment opportunities is on the rise. Many jobs can be performed on a computer, and your employer saves money if they don't have to rent and heat an office for your to sit in. Thus, it is expected the trend of increasing home-based employment will continue.
What are some modifiable lifestyle habits that have the most significant effects on IBD disease activity?
It would be great if we could identify key modifiable habits that effect disease activity (positive and negative) in order to understand ways to minimize disease activity? Some measures I would propose studying include: amount of sleep, alcohol use, smoking, hours worked per day or days per year, exercise, weight management, frequency of social/family interaction.
Develop a SPECIAL TAPE that will help hold the osty appliance on the skin when your out-put is very watery and there is gas involved and your stoma is sucking in!
I have had a very BIG problem of appliances blowing (2 to 4 times per day) when the stoma is sucking in and the out-put is watery and gas is involved. When this is happening and you are changing that much your skin is raw. You are burning through appliances left and right (cost). Not to mention your physiological well being!!
Not so much a new research idea, but something to include in existing research efforts: that is: cost. What does the cost of the treatment or medication mean? Does the benefit justify the cost?
Especially for those on fixed incomes, or low incomes, this information may be vital. An older or generic medication may have to be used.
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?
Impact of Obesity on Disease Activity andPatient-Reported Outcomes Measurement InformationSystem (PROMIS) in Inflammatory Bowel Diseases
A Novel Patient-Reported Outcome-Based Evaluation (PROBE) of Quality of Life in Patients With Inflammatory Bowel Disease