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!
The use of a specialized technique in Physical therapy developed by Clear Passages to alleviate intestinal obstructions to prevent surgery and mediate obstruction symptoms.
I have used this therapy to alleviate symptoms of intestinal obstruction and alleviate symptoms associated with blockages. It has prevented me from having surgery twice now. I have had two surgeries in the past and the adhesions plus active crohn's predispose me to intestinal blockage and obstruction.
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
Why some women with Crohn's Disease achieve remission, during the second and third trimester of pregnancy, then flare months after giving birth.
Because, it happened to me with both of my.pregnancies. During my first trimester, I had to be hospitalized with partial obstruction. After that, I was healthier than I'd been in years, until a few months after giving birth.
Use Next Generation Sequencing software developed by Charles Chiu, M.D. and associates at the University of California, San Francisco to see if any pathogens are associated with IBD.
This software can take blood or spinal fluid and compare 10 to 20 million DNA sequences against a database of all known pathogens.
Do changes in manufacturing processes of Biologics alter the clinical impact (treatment success and/or adverse events)?
Biologic medications are developed through a complex process of using living organisms to harvest the biologic proteins. Manufacturers sometimes alter the manufacturing process, and these changes have the potential to cause slight changes in the final product. There is a lack of data/research regarding the impact of these slight changes. Furthermore, biosimilars (biologics developed by new manufacturers with different manufacturing processes), are pending FDA approval. Biosimilars will not require as extensive clinical testing prior to approval, compared with the original manufactured products. We ought to collect extensive data to better understand if slight changes in biologic proteins have a clinical impact.
Develop non-invasive methods to remove hemorrhoids and perianal skin tags from IBD patients without the risk of ulcers, harm to sphincter, etc.
IBD patients are more much more likely to get hemorrhoids and skin tags (up to 37% of Crohn's and 25% of Colitis patients get skin tags - whereas only 4.4% of the general population gets hemorrhoids). But IBD patients either don't get them removed, or else risk significant harm in doing so. Innovative methods are needed to address the needs of this significant patient base.
Develop nutritionally sound and bio-available nutritional supplement(s) addressing long term health issues associated with poor vitamin/ mineral/ nutrient absorption due to rapid transit time, medication and/ or scarring of the intestinal lining.
Long term chronic IBD often includes development of nutritional deficiencies due to diet, eating patterns, medication side effects and intestinal scarring which are difficult to overcome using traditional supplements due to low bio-availability, supplement form, difficulty incorporating into liquid, soft or normal diet, nutritional completness.
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.
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