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
Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking in the CCFA Partners Cohort
A biobank is a collection of samples from patients (including spit, stool or blood). Biobanks are very important for understanding risk factors for developing disease or for severity of disease. We wanted to understand more about why patients with inflammatory bowel disease (IBD) would or would not participate in a biobank. We first did a series of interviews over the phone with patients who were participating in the CCFA Partners study. This helped us to understand the important concerns about biobanks and develop a survey for use in CCFA Partners. We then sent a survey to over 800 people with IBD in CCFA Partners. We did a total of 26 phone interviews. Patients doing the interviews told us that they had concerns about how samples would be collected/stored; who would be allowed access; whether these samples would be used for other things (not only research); and whether this would affect whether they could get life insurance. Most people were not that worried about using the blood for genetic studies. People thought that that biobanks were important for research, that they might lead to a cure; that by donating they would be helping others or family members with IBD; and hoped that they might personally benefit, although most understood that they likely would not. These themes aided in the development of a survey instrument to assess perceptions of biobanking. A total of 476 people initially finished the survey. Almost 40% said that they would 'definitely yes' donate samples, 56.0% would 'probably yes' donate, 5.1% 'probably no' and 0.7% 'definitely no'. There were no factors that made someone more likely to donate (reported donation rates were not different for Crohn's disease (CD) versus ulcerative colitis (UC), remission versus active disease, or education level. People were most willing to donate spit, followed by blood and lastly stool. Knowing these important thoughts on sample donation/biobanks will help researchers to develop consents for IBD biobanks and design educational materials on biobanks for IBD A biobank is a collection of biological samples, such as saliva, blood, and stool, from individuals with a common condition such as inflammatory bowel disease (IBD). Biobanks are important for understanding risk factors for developing disease or for severity of disease. We wanted to learn more about IBD patients’ understanding of and willingness to participate in a biobank. We first did 26 phone interviews with patient volunteers participating in the CCFA Partners study. Those interviews helped us better understand concerns related to biobanks. Patients doing the interviews told us that they had concerns about how samples would be collected/stored, who would be allowed access, whether these samples would be used for anything other than research, and whether participation in a biobank would affect life insurance eligibility. Most patients were not that worried about using blood for genetic studies. Participants thought biobanks were important for research, that they might lead to a cure, that by donating they would be helping others or family members with IBD, and hoped that they might personally benefit. These results from the phone interviews were used to develop an online survey instrument to assess perceptions of biobanking. In a larger sample, a total of 1,007 people with IBD completed the online survey. Almost 40% said they would ‘definitely’ donate samples, 56.4% would ‘probably’ donate, 3.6% ‘probably not’, and 0.6% ‘definitely not’. There were no differences in willingness to donate specimens based on disease type (Crohn’s vs. ulcerative colitis) or on disease activity (in remission vs. currently active disease). People were most willing to donate saliva specimens, followed by blood and lastly stool samples. Knowing these important attitudes and beliefs about sample donations and biobanks will help researchers develop consents and educational materials related to biobanks that will encourage wider involvement.
Full Published Manuscript
biobanking; sample collection; sample storage, confidentiality; HIPAA; community; population
|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|