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!

Active Studies

The Effects of Antidepressant Medication and Social Support on Disease Progression in IBD Patients

Description: This study will look at how social support and antidepressant use may affect inflammatory bowel disease symptoms.
Researcher: Dr. Ann M. Kerlin from Luther Rice University
Who can participate?
All CCFA Partners patient members are eligible for this study.
What would I have to do?

Just by completing your regular Partners surveys every 6-months your data will be included in this particular research study.

Medications , Mental Health

Symptom Clusters in Adults with Inflammatory Bowel Disease

Description: This study will look at common IBD symptoms (e.g., pain, fatigue, sleep disturbance, depression, and anxiety) and aim to better understand clusters of symptoms that appear in some patients.
Researcher: Samantha Conley School of Nursing at Yale University
Who can participate?
Adult members of CCFA Partners with Ulcerative Colitis or Crohn’s disease who have completed at least two consecutive surveys. Note: Partners who are pregnant will not be eligible for this study. Partners who have had a total colectomy will also not be eligible.
What would I have to do?

If you meet the eligibility criteria described above, the data you provide in your regular 6-month Partners surveys will automatically be included in this research study. You don’t have to do anything else.

Other

Psychological Factors Associated with Adherence to Oral Treatment in IBD

Description: This study aims to understand associations between psychological distress (i.e., depression, anxiety, and stress), motivation, and competence with adherence to oral anti-IBD therapy.
Researcher: Dr. Guy Weiss from the University of California, Los Angeles
Who can participate?
All CCFA Partners patient members are eligible to participate in this study.
What would I have to do?

Partners will be asked to complete an additional online survey at the end of their baseline and/or 6-month follow-up survey.

Note: Only a select number of Partners will be offered the opportunity to complete this additional survey.

Medications , Mental Health

Patients’ Attitudes and Preferences for Outcomes of Inflammatory Bowel Disease Therapeutics (P-POD)

Description: This study will look how patients value the risks and benefits of IBD therapy.
Researcher: Dr. James D. Lewis at the University of Pennsylvania
Who can participate?
Adult members of CCFA Partners who have Crohn’s disease or Ulcerative Colitis without an ostomy or J-pouch
What would I have to do?

Participants will be asked to complete an online survey about how you value different IBD therapies.

Lifestyle

Food And Crohn’s Exacerbation Study (FACES)

Description: This research project is looking at the effect of different dietary patterns on the risk of relapse of Crohn’s Disease.
Researcher: Dr. James Lewis at the University of Pennsylvania
Who can participate?
Individuals with Crohn’s disease that is in remission. (Note: We are no longer enrolling new patients in this study.)
What would I have to do?

If you choose to participate, you will be asked to make small changes to your diet. You will also complete short online surveys about your symptoms, medications, and diet at specific times during the study.

Diet

Rare IBD Characteristics Study

Description: This study will look at how genes may be linked to the development of rare IBD characteristics: eye inflammation, arthritis of the spine, colon cancer, and skin ulceration.
Researcher: Dr. Balfour Sartor from UNC School of Medicine Dr. Dermot McGovern from Cedars-Sinai Medical Center
Who can participate?
Individuals with inflammatory bowel diseases who have ever been diagnosed with eye inflammation (uveitis, scleritis, episcleritis), arthritis of the spine (ankylosing spondylitis), colon cancer, or skin ulceration (pyoderma gangrenosum) can participate.
What would I have to do?

Fill out a form with your doctor’s contact information and provide a small saliva sample via U.S. mail. You will be mailed the supplies you need to provide this sample.

Genetics

Genetic and Environmental Risks for Inflammatory Bowel Disease Study

Description: This study is looking at genes and environmental factors, such as diet and gut bacteria, that may be associated with developing Crohn’s disease or ulcerative colitis.
Researcher: Dr. Ramnik Xavier and Dr. Deanna Nguyen at the MGH Crohn’s and Colitis Center
Who can participate?
This study aims to recruit at least two first-degree family members (you and a parent, sibling, or offspring aged 7 years and older) with inflammatory bowel disease and at least one family member without any autoimmune diseases.
What would I have to do?

Participants in this study will be asked to:

• Provide a saliva or blood sample

• Provide an optional urine and stool sample

• Complete study related activities by phone, email, or postal service

Genetics , Environment

Defining the Genetic Architecture of Crohn’s Disease in the Ashkenazi Jewish Population

Description: This study will look how Ashkenazim specific genetic variants contribute to Crohn’s disease.
Researcher: Dr. Judy Cho at the Icahn School of Medicine at Mount Sinai, New York.
Who can participate?
Adult members of CCFA Partners who report Ashkenazi Jewish ancestry
What would I have to do?

Participants in this study will be asked to:

• Provide a saliva sample

• Provide IBD-related medical and family history

• Complete study-related activities by phone, email, or postal service.

Genetics

Multi-Center African American IBD Study (MAAIS)

Description: This study is looking at genes and environmental factors that may be associated with developing inflammatory bowel disease.
Researcher: Dr. Steven Brant from Johns Hopkins School of Medicine
Who can participate?
Adult members of CCFA Partners who self-identify as being African American
What would I have to do?

Participants in this study will be asked to sign a consent form, fill out a written questionnaire and contribute about 3 tablespoons of blood. Your spouse or friend that does not have IBD may also be eligible to join this study as a healthy volunteer. Compensation includes $40.00 for all participants for enrollment. An additional $10.00 referral fee may also be available.

Genetics , Environment

OTIS Autoimmune Diseases In Pregnancy Study

Description: The purpose of the study is to collect data on children born to mothers with inflammatory bowel disease. Researchers will evaluate the risk of birth defects in children of patients exposed to certain medications during pregnancy.
Researcher: Dr. Christina Chambers of University of California San Diego (UCSD)
Who can participate?
Women diagnosed with Crohn’s disease or ulcerative colitis who are pregnant. Must have been pregnant for less than 20 weeks.
What would I have to do?

If you choose to participate, you will undergo telephone interviews and provide medical records to researchers from the OTIS Registry. Children born to mothers who participate would be followed for up to 5 years for growth and development (with review of their medical records), including in-person examinations and testing in the first year and in the time period between 3.5 and 5 years.

Women’s Health

Contact us at info@ibdpartners.org.

IBD Partners will notify you via email if you qualify for any of the studies described here.


External Research Studies


Published Studies VIEW ALL
Social Media Use and Preferences in Patients With Inflammatory Bowel Disease

Read Study
Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network

Read Study
Paternal Disease Activity Is Associated With Difficulty in Conception Among Men With Inflammatory Bowel Diseases

Read Study