CINCINNATI – The Agency for Healthcare Research and Quality has awarded a $12 million grant to Cincinnati Children's Hospital Medical Center for the creation of an inflammatory bowel diseases (IBD) registry that will initially link 27 sites across the nation.

The grant builds on the research from last year's $8 million "transformative" research grant from the National Institutes of Health to create a network of patients, clinicians and researchers to improve management of chronic care. Although patients with any chronic illness could eventually benefit from this work, the grant is focused on enhancing an already-successful collaborative network (ImproveCareNow) focused on IBD, which affects around 100,000 children in the United States.

The collaboration will make available data about symptoms, treatments and outcomes for patients at multiple locations. It will allow doctors and researchers to assess various conditions and options on past and present cases, providing a searchable database – never possible before – about which procedures are having the greatest positive impacts on patients.

The new registry will allow information to flow directly from patients' electronic medical records into the database, creating a real-time body of shared knowledge that can be accessed and reviewed immediately.

"This grant has made possible the IT infrastructure necessary to pool electronic clinical data from multiple hospitals and practices in order to promote continuous quality improvement work and simultaneously learn more about the real world effectiveness of the multiple treatment options for patients with this condition," said Michael Kappelman, MD, MPH, an assistant professor of pediatrics at the UNC School of Medicine, one of the sites participating in the registry.

The principle investigator for the project, John Hutton, MD, director of Biomedical Informatics at Cincinnati Children's, expects the registry to come on-line in stages over the next three years.

"IBD is a relatively uncommon condition so no center has enough patients to determine the best care practices," said Hutton. "The registry will make the latest and most up-to-date information about treatment and outcomes available to everyone. Our hope is that this project will demonstrate this is a dynamic, effective way to identify the most successful treatment options and get them into broader practice much faster."

The registry will build on the work of the ImproveCareNow network of physicians, which over the past four years has been collection and sharing information about IBD. By sharing information and comparing notes, doctors have been able to improve remission rates for patients with IBD by as much as 20 percentage points over just the past three years. As of June, 71 percent of the patients cared for by the collaborative were in remission.

"Until now, medical treatment has been largely a private affair, with patients and their caregivers working together as independent units. This initiative allows those in the healthcare system treating these diseases to compare notes frequently and to rapidly implement effective interventions," said Wallace Crandall, MD, director, The Center for Pediatric and Adolescent Inflammatory Bowel Disease, Nationwide Children's Hospital, Columbus.

In addition to Cincinnati and Columbus, the grant proposal was also prepared by investigators at the University of Vermont (where ImproveCareNow is based), Children's Hospital of Philadelphia, the Children's Hospital in Denver, University of North Carolina, and Nemours.

Locations of GI practices included in this chronic care collaborative are on the next page.