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!
Keep or Destroy? Attitudes of Patients With Inflammatory Bowel Diseases on Biospecimen Handling at Biobank Closure
A biobank is a collection of samples from patients (including spit, stool or blood). Biobanks are important for understanding risk factors for developing disease or for severity of disease. The purpose of this study was to understand how patients with inflammatory bowel diseases (IBD) feel about the continued use of their samples after the biobank has closed. A total of 26 CCFA Partners members participated in a phone interview about the risks and benefits of their samples being used for research, and the results of these conversations were used to create a survey. The survey included three primary themes: 1) degree to which samples remain an individual’s property after donation; 2) samples are a good that can be sold; and 3) the belief that results from sample analysis could lead to discrimination. About 1,000 CCFA Partners participants completed the survey online. Most participants expressed the desire to know what would happen to their samples and genetic information if the biobank closed. Most were comfortable with the samples and genetic information being destroyed. Most were also comfortable donating their samples and genetic information to IBD research. Most participants were not comfortable with selling their samples and genetic information after the biobank closes. We learned that it is important for researchers to create a plan for samples if the biobank closes and to communicate this plan to the participant at the beginning of the study.
Full Scientific Abstract
biospecimen; biobank; biobanking; specimen; biospecimen handling; consent; informed consent; genetic testing
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD
After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.
Full Scientific Abstract
kids & teens; K&T; pediatric; age; kids; teens; community; population; resource
|Research Methods, Study Updates|