The importance of research for patients with IBD, and how IBD Plexus is leading the way
Published: June 22, 2020
Did you know that the Crohn’s & Colitis Foundation is the largest patient organization dedicated to accelerating research toward cures for Crohn’s disease and ulcerative colitis? The Foundation funds and supports tens of millions of dollars of IBD research every year. But why is research important, and how do we support it?
Research is what allows doctors to decide which treatments are best for patients, helps us develop new medicines, and makes new procedures possible. It also helps us understand real-life experiences of IBD patients so that we can better prioritize what to research to improve the quality of life of people with these diseases and ultimately develop cures.
What is IBD Plexus®?
We know that research is most helpful to patients when it is fast, transparent, trustworthy, and a shared effort among researchers, clinicians, and patients. That’s why the Foundation built IBD Plexus®. IBD Plexus is the Crohn’s & Colitis Foundation’s national scale research platform that supports all kinds of research to develop new therapies as well as new tools to help physicians find the right treatment for the right patient.
Since its launch in 2017, IBD Plexus has become the largest collaboration platform in the United States accelerating IBD research. IBD Plexus:
- Has enrolled over 24,000 patients
- 7,700 adult IBD patients enrolled through provider sites
- 1,400 pediatric IBD patients enrolled through provider sites
- 15,200 IBD patients self-enrolled through online platform, IBD Partners
- Holds millions of pieces of data and over 100,000 biosamples like stool, blood, and intestinal tissue
- Has physicians and scientists from 85 academic and medical research centers and 9 life sciences companies participating
Medical researchers and life science partners have access to data and biosamples from a single technology platform, which can cut years off the research process. Researchers are able to capture, organize, and share massive amounts of data, and most importantly, can link all of this data to discover new causes of disease and new treatments.
Every researcher who generates new data from IBD Plexus resources, such as biosamples, returns the data back to the platform. This type of data sharing encourages collaboration between researchers and lets researchers build upon the work of others. Sharing data benefits patients because new research is more widely shared, happens faster, and can better inform decision-making for research, policy, and clinical care.
A patient-centered tool with improved representation
Another unique aspect of IBD Plexus is the focus on diversity and patient-centeredness.
Diversity & representation: Oftentimes in traditional clinical trials, enrolled patients are not representative of the larger population. Many patients are underrepresented including people of color, adults over the age of 65, and people who have had surgery or are taking certain medications. A priority for the IBD Plexus team is making sure that data shared through IBD Plexus represents the full picture of the IBD population in the US.
Patient-centeredness: Every program that feeds data into IBD Plexus has patient representatives helping to guide patient enrollment and data collection. We also prioritize research based on patient wants and needs. For example, through the IBD Partners online research program, which feeds data into IBD Plexus, patients can propose and vote on research topics. Through this research prioritization program, we’ve learned that patients want to see more research on diet, medications, cause of disease, predicting flares, co-occurring conditions, and alternative medicines. All research proposals that use data from IBD Plexus must align with a patient priority for research!
IBD Plexus builds and nurtures collaboration among patients, physicians, and academic and industry scientists, all of whom are driven by their common goal of improving the lives of people with IBD. Projects leveraging IBD Plexus – ranging from discovering new drug targets to piloting new diagnostic technologies to comparing existing treatments – have already begun to make an impact. By breaking down data access and data sharing barriers in research through IBD Plexus, the Crohn’s & Colitis Foundation believes that cures are within reach.
Click here to learn more about IBD Plexus and the Foundation's other research programs.
Emily Cerciello is Associate Director, Digital Health and Engagement for the Crohn's & Colitis Foundation.