CCFA Develops The World’s Largest IBD Research Database

CCFA Develops The World’s Largest IBD Research Database

The Crohn’s & Colitis Foundation of America (CCFA) recently announced a $17.5 million, 3-year grant from The Leona M. and Harry B. Helmsley Charitable Trust to fund a knowledge platform that aims to aggregate and centralize patient information for a wide range of research efforts. This new initiative, called IBD Plexus, seeks to accelerate progress in treating the disease through novel research and precision medication to achieve more accurate diagnoses, treatments and eventual cures to address inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis.

Crohn’s disease and ulcerative colitis are extremely painful chronic conditions that comprise a group of illnesses called inflammatory bowel disease (IBD). The underlying cause of IBD remains unclear and there is no cure for the disease so far. Estimates suggest that 1.6 million Americans suffer from IBD.

IBD Plexus involves IBD stakeholders, academic and industry scientists, clinicians, healthcare providers and patients of all ages. The initiative nurtures cooperation and collaboration to ultimately offer better care for those with the disease.

James Lewis, who is a Professor of Medicine and Clinical Epidemiology at the University of Pennsylvania and responsible for developing IBD Plexus, explained in a press release: “We have seen breakthrough discoveries in IBD, but progress toward identifying effective, personalized treatments and potential cures has been slow. There is a strong and growing demand from both the medical and patient communities for new therapies that will keep IBD in remission, better tools to help select the right therapy for the right patient, and practical ways to reduce variability in the quality of care for individual patients.”

IBD Plexus integrates an enormous data management platform that can host, organize, and disseminate data for research. It is expected that within 3 years, data from more than 40,000 crohn’s and colitis patients will be included, along with microbial and genomic profiles from 7,000 patients who will be followed over time.

“We are extremely grateful to the Helmsley Charitable Trust for their vision and generosity. IBD Plexus provides the infrastructure and capacities to dramatically shift the paradigm, and facilitate and accelerate IBD research,” said Caren Heller from the CCFA.

“This project embodies the Helmsley Charitable Trust’s commitment to establishing close and productive partnerships with the organizations that offer the greatest potential to impact the areas that we support. We are thrilled at the prospects of what this important new research platform can achieve in advancing therapies, care and the path to a cure for those with IBD,” noted Sandor Frankel, Helmsley Charitable Trust trustee.

“Today’s advances in information technology and the lower cost of genomic sequencing are providing new tools with which to investigate and cure IBD. We’re proud to be supporting the scientists, clinicians and patients who will link and study data for insights into the causes of Crohn’s disease. With IBD Plexus, the field will have the highly powered, sophisticated tools it needs to get to a cure, and until then better treatments and patient care,” explained Jim O’Sullivan, the Helmsley Charitable Trust’s IBD and Crohn’s Disease Program director.

IBD Plexus allows scientists, clinicians and patients to register and share large amounts of data on those with IBD, which is a significant improvement for advancing treatments and a cure for IBD,