Cincinnati Children's, North Carolina collaborate to create registry system for IBD

Building on the success of previous efforts among researchers and caregivers to improve the care of chronically ill children, North Carolina Children's Hospital is one of 27 sites across the nation developing a disease registry for inflammatory bowel diseases (IBD). The research collaborative is part of a $12-million grant to Cincinnati Children's Hospital Medical Center, enabling the creation of this first-of-its-kind registry system providing real time information on thousands of IBD cases across the country and, eventually, around the world.

This extraordinary collaboration will make available electronic medical record data about symptoms, treatments and outcomes for patients at multiple locations throughout the United States. It will allow doctors and researchers to assess which treatment strategies are having the greatest positive impacts on patients.

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 inflammatory bowel diseases, including Crohn's disease and ulcerative colitis, conditions that affects around 100,000 children in the United States. The University of North Carolina Chapel Hill is one of the founding centers in the ImproveCareNow collaborative.

"I am particularly excited to be working with this national, multidisciplinary team of investigators on this innovative and ambitious project," said Michael Kappelman, MD, MPH, an assistant professor of pediatrics at the UNC School of Medicine. "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."

Kappelman is a pediatric gastroenterologist, digestive disease epidemiologist, and health services researcher at UNC Chapel Hill with both clinical and research expertise in pediatric IBD. He has been the chair of the ImproveCareNow research committee for three years and has been newly named the collaborative's director of data management. Kappelman and Darren DeWalt, MD, MPH, from the division of general internal medicine, are co-investigators on this grant.

The grant was awarded by the federal Agency for Healthcare Research and Quality, which supports research that leads to more informed decisions and improves the quality of health care services. This 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.

Rather than waiting months or years for peer-reviewed papers to be published on outcomes involving a relatively small number of 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, making best practices and corresponding outcomes available to clinicians, researchers, hospitals, clinics, administrators, policymakers, and even patients themselves.

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 is the next step in what has been a successful effort over the past four years among caregivers and researchers who have been sharing information on IBD through the ImproveCareNow network of physicians. 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 30, 71 percent of the patients cared for by the collaborative were in remission.

Source: University of North Carolina School of Medicine