Research Ideas  

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Welcome to IBD Partners Research Ideas Page!

In this area you will be able to:

  • Propose, vote on, and discuss research ideas
  • View current studies
  • View published research

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You are an active participant in  IBD Partners research prioritization process! Have you ever had a question about IBD that you wish science could answer? Tell us what research is important to you!

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!

Published Studies

Year Publication Categories
2016
Evaluation of Gastrointestinal Patient Reported Outcomes Measurement Information System (GI-PROMIS) Symptom Scales in Patients with Crohn's Disease in CCFA Partners

Summary

Patient reported outcomes (PROs) are important measures of how well treatment works in Crohn’s disease (CD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a new scale for measuring PROs for physical, mental and social health. The results can be compared to those from people that don’t have IBD. A gastrointestinal (GI) PROMIS scale was recently developed. The GI scales were not studied in large numbers of Crohn’s patients, but were studied in people all across the United States. We studied these questions in 1839 people with Crohn’s disease in CCFA Partners. Most (75%) were women. People with Crohn’s disease reported more fatigue, anxiety and pain compared to people without Crohn’s disease. People with Crohn’s disease reported less reflux, problems swallowing and constipation than people without Crohn’s disease. Other GI symptoms for people with Crohn’s disease were similar to those reported by people without Crohn’s disease. Compared to people in remission, people with active CD reported worse symptoms on the GI-PROMIS scales for all symptoms except problems swallowing and constipation. Those with a worse quality of life, as measured by the Short IBD Questionnaire (SIBDQ), reported worse symptoms on the GI-PROMIS scales all symptoms. People who reported more nausea, diarrhea, gas/bloat and abdominal pain reported more psychosocial symptoms on the PROMIS scales. In summary, those with worse symptoms on the GI-PROMIS scales scored worse disease activity scales, quality of life scales and more symptoms of depression and anxiety. These scales could be important ways to measure symptoms in the future.


Full Scientific Abstract

Keywords
Patient reported outcomes; PROs; PROMIS; survey instruments; Crohn’s disease; CD

Research Methods, Health Maintenance
2016
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease

Summary

Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll.

In the OSCCAR cohort, 243 of the 320 participants consented to join the CCFA-Partners cohort. However, only 44 participants completed enrollment in CCFA-Partners. OSCCAR participants who completed enrollment were better educated than those who did not complete enrollment. In the SHARE cohort, 436 participants completed enrolment in CCFA-Partners. SHARE participants who completed enrollment were more often women and white. If they had Crohn’s disease, those who completed enrollment had fewer disease symptoms and if they had ulcerative colitis, those who completed enrollment had less extensive disease. Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand opportunities for research. Although linkage is possible, participant’s willingness to complete the linkage is the limiting factor. Asking participants in a traditional cohort at the time of enrollment may be a way of maximizing linkage to CCFA-Partners.


Full Published Manuscript

Keywords
cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health

Research Methods, Study Updates, Health Maintenance
2012
Development of an Internet-Based Cohort of Patients with Inflammatory Bowel Diseases (CCFA Partners): Methodology and Initial Results

Summary

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

Keywords
community; population; resource; outreach

Research Methods, Study Updates

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