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!
Could virtual colonoscopy replace conventional colonoscopy as a routine method of assessment for patients in remission?
Virtual colonoscopy is less invasive, reducing the risk of bowel perforation and eliminating the need for anesthesia.
Do longitudinal evaluation of Vit D3 findings relate with disease activity, progress, treatment response, or remission?
Crohn's patients appear to have consistently low Vit D3, and disease prevalence is higher in northern latitudes with less sun and lower natural Vit D3 exposure and levels. Ultimately conduct longitudinal study to evaluate benefit aggressive management of Vit D3 to assist as adjunct in therapy, and to consider benefit of supplementation in at possible risk populations (1st degree family at high latitudes).
What is being done for surgical research to improve the lives of patients with multiple organ removal due to IBD/Ostomy who experience pelvic floor total collapse, including sexual function?
So far, reconstructive surgery to assist aging or disease complication organ losses causing serious pelvic floor collapse, sexual function seems IGNORED. When a woman has breast cancer, she is accepted and provided a method of reconstruction surgery to feel WHOLE and this assists both body and mind recovery in surviving her cancer. When an IBD patient spans losses and complications over time to end up with a non-immediate loss of feeling WHOLE, there's little to no information or medical access to having the RIGHT to be rebuilt and developing methods to surgically repair to reasonable expectations the pelvic floor, core and sexual health of someone who is missing large intestine, uterus, cervix, small gut and other organs from their illness trajectory to survive. Many of us are left at young age without our sexual function. We develop urological, bone, muscle/tissue wasting and other serious impairments and are ignored or told to "live with it", as the only answer. Where is the surgical research to develop and normalize the many of us suffering without answer?
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?
Research on how many people start out with IBD and then get one or more Auto Immune illnesses as well as multiple surgery complications from IBD/Ostomy and/or other Auto Immune illnesses
I've seen it happen over 100 times in all my years as an IBD advocate. Patients have IBD & one or more such as MS, or Lupus, or RA, Fibromyalgia, Diabetes, Lyme's, and more. I myself have Crohn's, Uveitis, Raynaud's & Acne Rosacea. Some of us are further compromised or vulnerable due to multiple surgeries and aging (females) complications such as Osteoporosis, adhesion formation, and more. This leaps off into mental health, financial stability and sexual functions.
I moved from New York City to Burlington, VT and my medication went from $6000 every 2 months to $24k. It quadrupled because I crossed state lines. I can't be the only one who is shocked by this and are curious why such a thing could happen.
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 read it all caused it but they couldn't find the fourth factor.
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases