Why Not Every Study on IBD Is a Breakthrough

Patients Must Use Critical Thinking When Reading About IBD Research

Close up of test tubes in rack in laboratory
Research is so important to learning more about IBD. However, it's a good bet that just one research study won't tell us the cause or the cure for IBD. Paul Bradbury / Getty Images

Research into the causes of inflammatory bowel disease (IBD) is important, needed, and necessary. With quality research, scientists will be able to find more clues about what causes IBD and how to effectively treat it. However, not every research paper about IBD is a breakthrough. Indeed, not every research paper that seems promising at first even winds up leading to an important discovery about IBD later on.

There's a long road before an interesting discovery made by researchers can become something that can be used by physicians to help patients or by pharmaceutical companies to make medicine. Other scientists and researchers must study the initial results and be able to do another study and get the same results.

When researchers suspect they can find out something important, they design and undertake a small study. If that study does show something important, bigger studies are done. Along the way, it might be found that the bigger studies don't have the same result that the smaller study did. At that point, some analysis needs to be done to figure out what happened between the two studies and why they don't match. When research doesn't wind up being as important as first thought, it is certainly disappointing to researchers, physicians, and people with IBD.

An Example of Preliminary Research

Scientists have known for some time that the guts of people with Crohn's disease and ulcerative colitis contain different amounts of bacteria and proteins than people who do not have IBD.

Knowing that the makeup of the contents of the gut is different definitely spurs knowledge forward and helps researchers narrow down what to study next.

It's difficult, however, to figure out exactly what having more or less bacteria or more or less proteins means in the big scheme of things. Does the IBD cause these changes to happen?

Or does this change come about for another reason? How do these changes relate to the causes of IBD? There are ideas about what all this could mean, but we don't yet know the answers to these questions for sure.

One perfect example of early research is a 2016 study published in the journal mBio that studied the organisms in the gut of people with Crohn's disease and compared it to the organisms in people without Crohn's disease. The families involved in the research, those who had members with IBD and those who had no history of IBD, were in northern France and Belgium. What scientists discovered was that two types of bacteria, Escherichia coli and Serratia marcescens, and one type of fungus, Candida tropicalis, were found in higher amounts in people who had Crohn's disease. 

When the bacteria and the fungus were studied in the lab, it was discovered that they interacted and created a group of cells that stick together, which is called a biofilm. Researchers took this biofilm and did more studies in a lab, and showed it caused inflammation in intestinal cells.

The study is important because it showed that there were differences in bacteria and fungus found in people with Crohn's disease when compared to those without Crohn's disease. It also showed that in lab studies, these organisms work together to affect cells in the intestine. However, this initial result is not enough to tell us if the fungus and the bacteria affect the development of Crohn's disease in humans.

So Now We Know What Causes Crohn's Disease?

No, we still can not say for certain what causes Crohn's disease. The new results on the interaction between fungus and bacteria certainly opens up a new direction for research. However, it was a very small study.

Included in the study were nine families that had members who had Crohn's disease and four families that had no members who had Crohn's disease. All the families were from a particular geographic area (northern France and Belgium). There were 20 people with Crohn's disease, 28 family members who did not have Crohn's disease, and 21 people from families that had no history of Crohn's disease. This is a total of 69 people, which is not enough of a sample to make a sweeping statement that includes all people with Crohn's disease across the world.

Further, it's thought that there could be as many as one hundred different variations of IBD. IBD experts often refer to IBD as a spectrum disease. If this is the case, and it's increasingly looking that way, IBD may be many diseases that overlap each other. Right now scientists and physicians put IBD into two buckets, Crohn's disease and ulcerative colitis (with a third bucket of indeterminate colitis for about 10 percent of patients). These buckets might expand in the future as we learn more about IBD. When you look at IBD from this perspective, there is certainly going to be more than one "cause" and one "cure." If IBD is, as experts think, more than only two distinct diseases, it makes sense that there are going to be more genes and more environmental triggers involved in causing them.

IBD patients and others interested in keeping up with medical research have likely heard the phrase "correlation is not causation." What this means is that when two things occur together, it is not always the case that one of them causes the other. Researchers can point out that the fungus and bacteria in the gut of people with IBD are different than in those who do not have IBD, but this correlation does not tell us that the bacteria or the fungus cause IBD. It's necessary to prove that there is a direct cause and effect relationship between two variables before any conclusions can be made.

Why Do Media Outlets Claim We Know the Cause of Crohn's Disease?

There are several factors that contribute to one research paper getting a lot of attention. An unfortunate reality of the internet world is that it is driven by traffic. The same way newspapers and magazines rely on a subscription base, web sites rely on the amount of people viewing pages and how many pages they view. A shocking or misleading headline can mean that an article gets shared in social media and clicked on far more times than one that uses a more truthful or sedated headline.

An additional factor in the sharing of stories about research studies is the system behind publishing scientific papers. An author that publishes a paper must then make sure their paper gets seen and acknowledged. The more the paper gets out of the halls of academia and into the lay press where it is read and discussed, the better. This can help researchers or institutions get more funding to do more research.

More research is always a good thing, but the end result is that there is enormous pressure on scientists to get as much attention as possible drawn to their study. The public relations department at the institution where a study took place will often help get the word out about the new study. The authors are then contacted by numerous media outlets for a quote. All it takes is for one quote to be misinterpreted or taken out of context, which then gets replicated across multiple media outlets, and there's a perfect storm of misinformation that may never get resolved. 

A Note From Verywell

Research is extremely important to patients with IBD and their physicians. It's through research that new treatments are developed and more is understood about the factors that may contribute to IBD. However, patients must use critical thinking when reading about IBD research and what it could mean.

There have been breakthroughs, and there will be more, but unfortunately there is unlikely to be one single, definitive cause or cure for a disease as complex as IBD. Quality research will keep moving the knowledge base forward, and great strides have been made already. It is unlikely that there will be one scientific paper that will unfold the secrets of IBD, which is why we must continue to advocate for more research in our communities and governments, until we understand more about IBD. 

Sources:

The Crohn's and Colitis Foundation of America. Facebook post. 28 Sept 2016. https://www.facebook.com/ccfafb/posts/1114776048608272

Hoarau G, Mukherjee PK, Gower-Rousseau C, et al. "Bacteriome and mycobiome interactions underscore microbial dysbiosis in familial Crohn’s disease." [published online September 20, 2016]. mBio.

Rehman J. "Accuracy of Medical Information on the Internet." Scientific American. 2 Aug 2012

Wood, M. "Why haven’t we cured inflammatory bowel disease?" Science Life. 6 March 2015.

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