The Crohn’s & Colitis Foundation of America (CCFA) gave a recent update on its research initiative, the large-scale registry platform called IBD Plexus. IBD News Today participated in the media briefing, which took place during the Advances in Inflammatory Bowel Diseases Clinical & Research Conference (AIBD) in Orlando.
IBD Plexus is the first and largest exchange platform on research and information on ulcerative colitis and Crohn’s disease, two inflammatory bowel diseases (IBD). The platform, developed by CCFA, comprises more than 40,000 IBD patients, healthcare providers, and scientists with the goal of transforming IBD research.
As Dr. James Lewis, chief scientist for IBD Plexus, noted in the briefing, IBD “affects the daily life of the patient, as well as of their family” and care needs to be improved. It is estimated that 1.6 million people in the U.S. suffer from the disease.
IBD Plexus, Dr. Lewis said, is “a research and information exchange platform to accelerate research and transform the care of IBD patients.” It is expected to stimulate collaboration between patients, clinicians, academia and industry, to identify new drug targets and biomarkers, and to improve the quality of care.
The platform has several components, including pediatric and adult registries, a biobank, data and analytic platforms, computing, and a centralized analytical lab. Data from existing cohorts are currently being migrated into IBD Plexus.
“As the leader in IBD research, CCFA is truly the only organization that can undertake this type of initiative,” said CCFA’s chief scientific officer, Dr. Caren Heller, MD, MBA, in a press release. “Rather than having multiple, fragmented research efforts and registries, IBD Plexus is providing access to data across study cohorts from a single point. IBD Plexus utilizes technology that enables its stakeholders to capture, organize and link large amounts of data on individuals with IBD, and to mine and share this data for insights into the causes of and potential treatments for IBD.”
“We have made tremendous progress very quickly,” noted Dr. Lewis. “We engaged key stakeholders early in the process through participation in IBD Plexus committees and workgroups. The continued support and excitement from our collaborators reinforces that IBD Plexus is the platform that is going to lead us to better treatments and eventually, cures.”
Several ongoing and planned studies will be part of IBD Plexus. One is the Prospective Adult Research Study (SPARC), a multicenter study with the goal of identifying predictors of response to IBD therapies and disease relapse. Others are the Quality of Care (QoC) program, to improve IBD patients’ care; the CCFA Partners Online Registry, based on electronic surveys of adult and pediatric patients to trace the course of IBD in a large, diverse population; and the Pediatric Risk Stratification Study (RISK), the first study being mapped to IBD Plexus.
Pediatric IBD is a key research area for CCFA. RISK is a large, multicenter study with over 1,100 Crohn’s disease patients, and its goal is to be able to predict, at the time of diagnosis, whether a child will develop a mild or complicated disease within 4–5 years — information that could help clinicians and parents decide on the best treatment option.
“The Pediatric RISK stratification study has proven that through team science we can accelerate progress toward precision medicine,” said Dr. Subra Kugathasan, principal investigator of the Pediatric RISK Stratification Study. “IBD Plexus will provide the opportunity to follow RISK patients into adulthood where, for the first time, we will have access to integrated pediatric and adult datasets. Providing access to these highly categorized robust datasets through novel analytic tools, we will start to unlock the power that the IBD Plexus platform has to exponentially expedite our research.”
The initiative’s next milestones will be the migration of the RISK data into IBD Plexus, the enrollment of patients in the SPARC study, and the release of quality of care program co-production dashboards and relevant research tools.
“This is an incredible exciting time for CCFA and all patients with IBD,” concluded Dr. Scott Snapper, chair of CCFA’s National Scientific Advisory Committee. “Patients can go online, sign to one of CCFA partners and contribute to advance research on the disease.”
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