IBD Plexus And The Future of IBD Research

How Research on IBD Is Changing With The Use Of Patient Databases

IBD Plexus
IBD Plexus is a program that's seeking to change the way research is done on IBD, and promote more research that can benefit patients.. Image © IBD Plexus

Inflammatory bowel disease (IBD) is a complicated set of conditions, and quality research is crucial to developing better treatments for patients. While we still don't know what causes IBD or how to cure it, ongoing research has led to better, more effective treatments, and has given scientists some clues on where to look for causes. Even though a considerable amount of work has been done, there is still a long way to go, and some aspects of Crohn's disease and ulcerative colitis are not well studied or understood.

Patients are becoming increasingly interested in promoting awareness of IBD and in learning how they can help with research. The good news is that now patients can now get directly involved, adding their information to a database that can be used for research and even in suggesting research topics.

Why Is IBD Research So Difficult?

Mounting a research project on IBD is a daunting prospect. Not only is there the complexity that is behind any research project, but there is the difficulty in recruiting patients. It takes a significant amount of time and effort to find patients and get them involved in the project. We now have electronic medical records, but the information is often in separate silos — all the records aren't accessible in one place. Records need to be pulled in and organized in such a way as to be useful to researchers. This is why "review" research is often done: scientists can take a number of studies already done on a particular topic, and compare the results.

This often yields results that are at a much higher level than one research paper, and studies that have conflicting results can be sorted through to come to a consensus on a topic.

How IBD Research Is Changing

Previously, patients were the subjects of research projects, but were not usually consulted about what direction research should take.

There has been a sea change, and now patients are being consulted when it comes to developing research projects. New tools are being developed that will help researchers understand what it is that patients want them to study, and help patients get more involved in research.

IBD Plexus

IBD Plexus is a program being developed by Crohn's And Colitis Foundation of America, with funding from The Leona M. and Harry B. Helmsley Charitable Trust. What this database will do is create a database of information from patients with IBD. Once the database is built, all the patient information will be in one place for scientists and researchers to access. This information can be sliced and diced in various ways, providing a wealth of data for research projects.

Data in IBD Plexus will also be available to patients. In this way, patients can also look at data and how their experience is informing the research process. IBD Plexus is slated to be up and running in 2018.

How Patients Can Get Involved

The idea of more research being done for patients with IBD is an exciting one, and many patients want to know how they can get involved and add their voice.

The easiest way for patients to get involved is to register with CCFA Partners. CCFA Partners is the "patient powered research network" that will feed into IBD Plexus. In CCFA Partners, patients can enter their data so that it can be used, in aggregate, with other patient's data for research. Not only that, but patients can also get reports based on their own data, and see how it compares with all the other patients enrolled.

The best part about CCFA Partners, though, is that patients are able to propose their own research projects. Other patients enrolled in CCFA Partners can vote on the ideas, and suggestions are reviewed by researchers. Researchers can see what IBD patients are really concerned about, and act on it. There have already been several papers published on CCFA Partners, and more are underway now.

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