Addressing top patient concerns through IBD research

Did you know that as an IBD patient, you can have an input into IBD research studies? It’s true – if you are a member of IBD Partners, you can propose a question about your disease and researchers can then turn it into a scientific study that can have a direct impact on your care in the future.  

IBD Partners is a patient-powered research network created by a partnership between the University of North Carolina School of Medicine and the Crohn's & Colitis Foundation that brings together over 15,000 IBD patients to do just that. A prime example of a patient question becoming a research study is the Foundation’s DINE-CD study – which is looking at the Specific Carbohydrate Diet™ compared to a Mediterranean diet and its ability to induce remission in patients with Crohn’s disease. 

The mission of IBD Partners is to empower patients, researchers, and healthcare providers to partner in finding answers to research questions that patients care about. The Crohn’s & Colitis Foundation and IBD Partners believe patients should have a leading voice in research prioritization. That’s why we invite participants to propose, discuss, and vote on the most pressing research topics in the IBD Partners online portal.  

This spring, the IBD Partners research team, with the help of patients and other healthcare advocates, conducted an analysis of the patient-submitted research questions and votes on the IBD Partners portal, generating the following list of the most important questions that patients want to see researched in the future. We hope that many researchers – not only from gastroenterology, but also nutrition, epidemiology, and other fields – will pursue research studies that address these priorities.

2020 top patient priorities for research

Six focus areas were identified as being the most important unmet needs in adult IBD research from the patient perspective, with two areas - diet and complementary medicines – being highest priority. 

Diet

The impact of diet on disease-related inflammation and symptoms is the most important area of research for IBD patients. Patients want to understand if alternatives to a typical Western diet, especially the Specific Carbohydrate Diet™, paleo diet, low-FODMAP diet, dairy elimination, or vegan diet could help achieve and maintain remission. Everyone faces decisions about their diet daily, and many patients with IBD have undertaken food elimination or specific diets to control flares. In addition to the diets above, patients also expressed interest in research about whether gluten, food additives or emulsifiers affect inflammation or symptoms.

Complementary medicine

Many IBD patients seek complementary treatments to help manage their disease symptoms. Patients indicated interest in researching whether medicinal cannabis has an anti-inflammatory response or can reduce disease activity. Additionally, many patients want to learn more about using probiotics to control or prevent flares. 

Medications

Patients’ priorities for research on medications points to a desire for precision medicine – understanding why some drugs work for some people but not others and in the sequencing and positioning of different therapies in different patient populations. Additional interests are in the long-term side effects of IBD medications, especially immunosuppressive drugs, as well as which treatment to try next if a medication stops working.

Mental health and autoimmune comorbidities

Research has found that anxiety and depression are two to three times more likely to occur in IBD patients compared with the general population. Patients want to know what role stress plays in inflammation, if patients like them are receiving mental health treatment, and what the relationship may be between IBD and anxiety. Patients are also interested in potential relationships between IBD and other autoimmune diseases, fibromyalgia, acne, sleep disorders, periodontal disease, and irritable bowel syndrome (IBS).

Course of disease

Patients want to know what factors may influence their likelihood of remission or flare. Top priorities are understanding if hormones and hormone changes, nicotine use, or getting a colonoscopy affect relapse. Additionally, patients are interested understanding how IBD affects lifestyle factors, like intimacy and physical activity. Patients are also interested in research about how changes in the physical environment (e.g. weather, seasonal allergens, etc.) affect their disease-related inflammation and/or symptoms. 

Cause of disease

Given the rapid rise of IBD in certain geographic regions, patients want to understand how geographic exposures – including immigration, urban environment, or veteran status – might contribute to disease development. Additionally, there is strong interest in whether early life exposures to infections, tobacco smoke, medications, chemicals, or psychological stress might contribute. Finally, patients want to explore associations between the gut microbiome and IBD, and further define the genetic components of IBD.  Patients are particularly interested in understanding the potential for their children to have IBD too. 

Patients also nominated surgery outcomes, pregnancy, access to care, and diagnostic methods as important areas for future research.

Moving these patient priorities forward

The Crohn’s & Colitis Foundation funds research projects across the research continuum, including basic, translational, and clinical research, in areas that are important to patients. In fact, several diet studies have already come out of IBD Partners, including the DINE-CD study as well as the FACES study led by Dr. James Lewis which found that a diet low in red & processed meat does not reduce flares. 

The Foundation is also funding research in other environmental triggers, such as of psychological stress and smoking, as well as the gut microbiome, genetics, precision medicine, and much more. The Foundation is committed to supporting a robust pipeline of investigators interested in a career in IBD. As a patient organization, the Foundation seeks research proposals that address the top research priorities of patients listed here. We encourage researchers to learn more about funding opportunities on our website.

How to join IBD Partners

If you aren’t yet a research participant, it’s easy to get started. All you need to do is join IBD Partners and you’re on your way to having an impact on future IBD research.

Emily Cerciello is Associate Director, Digital Health and Engagement for the Crohn's & Colitis Foundation.