IBD Partners is an online registry of more than 15,000 adult inflammatory bowel disease (IBD) patients from the U.S. and is the largest of its kind. The platform includes a registry for adolescents and children.
After enrolling in the platform, patients complete a series of surveys, providing information on several topics, which can include what they eat, what treatments they are receiving, and other issues concerning disease management and quality of life.
The registry is comprised exclusively of patient-reported data, which gives patients a chance to play a fundamental role in advancing research and helping the scientific community better understand IBD and how to best manage the condition.
“IBD Partners … allows patients to take on the role of citizen scientist,” Michael Kappelman, MD, one of IBD Partners’ principal investigators, said in a press release.
As IBD Partners, the platform now includes:
- New and improved health-tracking graphs, so patients can track additional health measures on a daily basis (as well unique events like yoga classes) and connect the data with their favorite mobile app to track steps, calories, or sleep;
- Enhanced prioritization to sort and review research ideas submitted by patients and descriptions of study activities and summaries of published research;
- A personal dashboard for patients to view their own health information, notifications, and a summary of what’s happening in the network;
- A new name, to emphasize the mission of the network, which is to empower the IBD community to collaborate in finding answers to questions that are relevant to patients today, to ultimately improve their quality of life.
“IBD Partners has not only given me the opportunity to better manage my own disease, but to also be a part of something bigger,” said Jessica Burris, a member of the Patient Governance Committee of IBD Partners who posed a question in the community that eventually led to the first-ever national study of dietary interventions in Crohn’s disease.
“I had always been curious why many IBD patients can only achieve remission via medication, while some are able to manage their symptoms with dietary changes,” Burris said. “It’s empowering and gratifying to know that I played a role in research that can help patients like me.”
The study Burris mentions was announced in March 2016 and received $2.5 million from the Patient-Centered Outcomes Research Institute to investigate the value of a carbohydrate-rich diet and a Mediterranean-style diet in preventing relapse in Crohn’s disease patients.
At the time Burris posed the diet-related question on the network, Dr. James Lewis read it and used it as motivation for the study, which became known as the Food and Crohn’s Exacerbation Study (FACES) study (NCT01926730).
“There is little scientific evidence to guide patients with Crohn’s on how they should modify their diet. Because of this, patients and their physicians face substantial uncertainty about the best diet for Crohn’s,” Lewis, the study’s primary investigator, said in a 2016 press release.
Now completed, the FACES study compared the effectiveness of a specific carbohydrate diet and a Mediterranean-style diet in inducing remission of symptoms and reducing mucosal inflammation in patients with active Crohn’s disease.
Specifically, researchers sought to determine whether the exclusion of red and processed meats reduced the risk of a relapse of Crohn’s disease.
In results presented at the 2017 Crohn’s and Colitis Congress, in patients with Crohn’s disease in remission, there was no difference in time to relapse in patients assigned to a high vs. a low red and processed meat diet, although adherence was only modest in the low meat group.