ORLANDO — The Crohn’s & Colitis Foundation of America introduced its newest research initiative known as IBD Plexus, a research knowledge and data exchange platform for Crohn’s disease and ulcerative colitis, at the Advances in Inflammatory Bowel Diseases Annual Conference.
“Our goal is to build a research and information exchange platform that will accelerate research and transform the care of IBD patients by uniting clinicians, patients, academic scientists and our industry partners,” James Lewis, MD, MSCE, professor of medicine and epidemiology, University of Pennsylvania, and chief scientist for IBD Plexus, said during a press conference.
With assistance from the CCFA, Lewis and colleagues developed IBD Plexus to focus on data integration and extraction. The platform seeks to link clinicians, researchers and data of patients with IBD to build collaboration for finding better treatments for UC and CD.
“Our hope is that we can optimize the use of precious data and samples that are obtained from patients who have IBD across the research community, with a goal of identifying new drug targets and new biomarkers and diagnostics, and ultimately to apply these in a way that will improve the quality of care for patients with IBD,” Lewis said.
Bringing together pieces
When Lewis and colleagues asked 30 scientists and clinicians what they need from a scientific standpoint to improve the field, the resounding request was a way to bring together patients with the disease, clinical data and self-reported data to help identify new targets and biomarkers. Lewis stated during his presentation
“[We want] to bring together these new resources to drive discovery, to increase collaboration among all parties, to find ways to improve the way we choose which patients will get what therapy and ultimately to improve the quality of care our patients receive,” Lewis said.
Lewis further stated that current therapies are “inadequate,” but not due to a lack of effort within the field.
“As a clinician who takes care of patients who have inflammatory bowel disease and a scientist who spent the better part of 2 decades trying to improve the way we treat patients, it’s easy for me to tell you our current therapies and approach to inflammatory bowel disease are inadequate,” Lewis said. “Even with the incredible advances, … there are countless patients in the United States and elsewhere around the world who still have active symptoms. Our therapies are inadequate not because people haven’t been trying, they are inadequate because there have been barriers to really moving the field forward faster. The goal of IBD Plexus is to find a way to move the field forward faster.”
IBD Plexus has various components, according to Lewis’s presentation, and will include pediatric and adult registries, a biobank, data and analytic platforms, high performance computing, a centralized analytical lab to generate new data and a researcher portal. Patients will have access as well.
“The idea is to take clinical data, such as that you get from a medical record, and patient reported data, things like exposures or life events, tie that to the data that you can derive from bio samples, such as blood, … in a way that you can pull all of those together,” Lewis said. “One of the key things about Plexus is to not do this in a single-patient type, but cover the spectrum of disease.”
Multiple defined cohorts will be included in Plexus going forward, including a cohort of adults, cohort of children with newly diagnosed disease, a large internet registry of patients followed over time, a quality of care program and real-world efficacy and safety assessments, according to Lewis. The patients included will come from existing CCFA initiatives, including CCFA Partners and CCFA’s Pediatric RISK research project and other research cohorts.
The CCFA provided $17.5 million from the Helmsley Charitable Trust to support the development and implementation of this program and Caren Heller, MD, MBA, chief scientific officer of CCFA, praised Lewis and other researchers in bringing this field-changing resource to life and believes it will help the field substantially.
“IBD Plexus is a platform that will really accelerate how we can get to precision medicine in Crohn’s and ulcerative colitis,” Heller said at the conference.
According to Lewis, data management, biobanking, computing services and cloud hosting are currently in development and vendors have already signed on to participate in this initiative. Also in development, a process to link data from the multiple cohorts and is being tested for an accelerator tool that will pull data directly from the enrollment sites’ electronic medical record system into IBD Plexus. Data from existing cohorts have already begun migrating into IBD Plexus. - by Melinda Stevens
Disclosures: Healio Gastroenterology was unable to confirm relevant financial disclosures at the time of publication.
Editor's Note: This article was updated on December 14 to reflect additional information.