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!
Collecting Biospecimens from an internet-based cohort study of inflammatory bowel disease (CCFA Partners): A feasibility study
CCFA Partners has been successful for survey-based research for many years. The purpose of this study was to determine whether or not it would be feasible to use the CCFA Partners Internet-based platform to collect biologic or biospecimen data such as saliva, blood and stool samples. We found that nearly 40% of participants contributed saliva and about 25% contributed blood samples. The majority of participants who contributed saliva or blood also sent a stool sample. All samples provided sufficient quantity and quality of material for genetic testing. Saliva and blood samples were genotyped for common mutations ("single nucleotide polymorphisms") known to be associated with inflammatory bowel disease. Stool samples were analyzed for bacterial content, which may be related to inflammatory bowel disease. Overall, this study supports that it is feasible to collect biospecimens using an Internet-based platform and will be successful on a larger scale to be used for many different types of research.
Full Scientific Manuscript
biospecimen; biobank; biobanking; specimen; biospecimen handling; healthcare; genetic testing
Development of an Internet-Based Cohort of Patients with Inflammatory Bowel Diseases (CCFA Partners): Methodology and Initial Results
This manuscript describes the creation of CCFA Partners and the first 7,819 participants. Of the people who took the first surveys, 72% were women, the median age was 42 years, 63% had Crohn's disease, 34% had ulcerative colitis and 3% had other IBD. CCFA Partners is a unique resource to study patient outcomes and satisfaction, quality of care and changes in disease management over time.
Full Published Manuscript
community; population; resource; outreach
|Research Methods, Study Updates|
Status of Prevention in Patients with Inflammatory Bowel Diseases within the CCFA Partners Cohort
Patients with inflammatory bowel disease, or IBD, may be more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use. Fortunately, there are simple activities that can prevent these from occurring. In a survey of over 7000 patients with IBD, only about half had a bone density scan or took calcium or vitamin D supplements to promote bone health. Only 40% reported having a skin exam and 16% reported always wearing sunscreen to prevent skin cancer. Less than two thirds had an influenza (flu) vaccine. These results show that not enough patients are doing simple activities to prevent weak bones, infections and cancers that may be related to IBD.
Full Scientific Abstract
preventive; care; active disease; flare; prevention; risk; educational interventions; intervention; education; outreach; community; population
|Research Methods, Health Maintenance|