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40,000 Patients Come Together with Researchers and Doctors to Create $40 Million Game-Changing IBD Research Initiative

ORLANDO, Fla., Dec. 11, 2015 /PRNewswire-USNewswire/ -- For the first time, more than 40,000 IBD patients, researchers, and healthcare providers will be brought together by IBD Plexus® to create the world's largest registry of IBD patients of all ages which will transform how IBD research is being conducted. IBD Plexus, the Crohn's & Colitis Foundation of America's (CCFA) newest research initiative, is the largest and most innovative research knowledge and exchange platform for Crohn's disease and ulcerative colitis ever created. Patients will come from existing CCFA initiatives, including CCFA Partners and CCFA's Pediatric RISK research project, as well as a Quality of Care cohort and a newly established prospective adult research cohort (SPARC IBD).

IBD Plexus was previewed today at a media briefing during Advances in Inflammatory Bowel Diseases, CCFA's Clinical & Research Conference. A recording of the briefing can be viewed here.

"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 Caren Heller, MD, MBA. "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."

With seed money provided by The Leona M. and Harry B. Helmsley Charitable Trust, CCFA embarked on a two-year discovery and planning process to conceptualize and design IBD Plexus. Dr. James Lewis, professor of medicine and clinical epidemiology at the University of Pennsylvania, and Chief Scientist for IBD Plexus, led a small group of IBD researchers who developed the plans to create this game-changing resource. At the end of this planning process in early 2015, the Helmsley Charitable Trust awarded CCFA an additional $17.5 million to support the development and implementation of IBD Plexus. The initiative has already made significant progress.

Data management and analytics, biobanking, cloud hosting and computing services are all in development, with contracts signed with world-class vendors to implement this ambitious vision. Additionally, the IBD Plexus leadership team and SPARC IBD vanguard subject enrollment sites have been selected.

Now in the build phase, IBD Plexus activities are focused on data integration and extraction. A process to standardize and link data across multiple cohorts has been developed and testing has begun for an accelerator tool which will pull data directly from the sites' electronic medical record (EMR) systems into IBD Plexus. In addition, migration of data from existing cohorts into IBD Plexus has started.

"We have made tremendous progress very quickly," said 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."

Pediatrics is one of the fastest growing populations of IBD patients and has been a key area of study for CCFA for many years now. CCFA's Pediatric RISK Stratification Study is on the verge of major breakthroughs in changing the way pediatric IBD patients are being diagnosed and treated, and is the first cohort being mapped to IBD Plexus.

"The Pediatric RISK stratification study has proven that through team science we can accelerate progress toward precision medicine," said Dr. Subra Kugathasan, scientific director of Children's Healthcare of Atlanta Combined Center for Pediatric Inflammatory Bowel Disease and 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."

Some children diagnosed with IBD have mild disease and do well with basic medication. However, many others develop severe disease with growth failure, impaired quality of life, continued active symptoms, and the eventual development of disease complications requiring surgery. As a result of the RISK study, doctors will soon be able to tell parents with accuracy, at the time of diagnosis, if their child will develop complicated disease within 4–5 years—empowering doctors and parents to decide on the best course of treatment.

Deloitte Consulting, LLP is developing IBD Plexus' big data management and analytics platform, in close collaboration with stakeholders across the research community. Deloitte's "ConvergeHEALTH Miner" suite of analytics strives to enhance innovation and create strategies to advance initiatives and programs that improve patient health outcomes.

IBD Plexus biobanking, kitting, and sample processing services are provided by BioStorage Technologies. This will give CCFA the capacity to receive and manage tens of thousands of biosamples from IBD patients, and provide researchers with genomic and microbial profiles on adult and pediatric patients who will be followed over time.

IBM SoftLayer has been selected to host the IBD Plexus application. SoftLayer's hybrid cloud infrastructure approach accommodates the strict patient health information security and regulatory demands while also providing the necessary scalable infrastructure capabilities to accommodate storage of large amounts of data derived from high-throughput technologies. It also provides the ability for provision, on-demand, high-performance cloud clusters to allow researchers to conduct extensive analysis.

For more information about IBD Plexus, visit

About Advances in Inflammatory Bowel Diseases Conference
Advances in Inflammatory Bowel Diseases, CCFA's Clinical & Research Conference, is the "can't miss" event for healthcare professionals and researchers who study and manage patients with inflammatory bowel diseases (IBD).The conference offers workshops and a four-track format designed for clinicians, researchers, allied health professionals, nurses, and pediatric gastroenterologists. This conference is endorsed by American College of Gastroenterology (ACG), American Gastroenterological Association (AGA), North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), and the British Society of Gastroenterology (BSG), and provides continuing medical education for physicians, nurses, and physician assistants.

About the Crohn's & Colitis Foundation of America
The Crohn's & Colitis Foundation of America (CCFA) is the largest non-profit voluntary health organization dedicated to helping patients battling inflammatory bowel diseases (IBD). CCFA's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who suffer from these diseases. The Foundation works to fulfill its mission by funding research; providing educational resources for patients and their families, medical professionals, and the public; and furnishing supportive services for those affected by IBD. For more information, visit, call 888-694-8872, or email


SOURCE Crohn's & Colitis Foundation of America
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