University of Vermont

University Communications

Colletti, ImproveCareNow Partners Receive Grant for Bowel Disease Registry

Release Date: 11-11-2010

Author: Jennifer Nachbur
Phone: 802/656-7875 Fax: 802-656-3961

(This report is adapted from a news release by Thomas McCormally, Cincinnati Children's Hospital.)

A $12-million grant will allow creation of a registry system unlike any before it, providing information in real time on thousands of cases around the country – and eventually the world. Although patients with any chronic illness could eventually benefit from this work, the grant will focus on inflammatory bowel disease (IBD) and enhancing an already-successful collaborative network called ImproveCareNow, created by researchers and caregivers to improve the care of chronically ill children and directed by Richard Colletti, M.D., professor of pediatrics at the University of Vermont.

It is estimated that about one million people in the United States have IBD, which includes Crohn' disease and ulcerative colitis, and 10 percent of them or 100,000 are children under the age of 18. Children with these diseases often suffer from abdominal pain, diarrhea, bloody stools, poor appetite, weight loss and poor growth, and must struggle to lead active lives. The diseases are due to a chronic inflammation of the intestinal tract.

The grant, which was awarded to Cincinnati Children's Hospital Medical Center as the lead site, involves an extraordinary collaboration among seven institutions, including the University of Vermont, where ImproveCareNow is based. The new registry 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 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 a 2009 $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 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, which includes nearly 30 different sites taking care of thousands of patients. 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.

While this award focuses on the ImproveCareNow network and IBD, it also serves as a pilot for implementation of a nationwide consortium of academic health centers that propose to share electronic health records and related clinical data for the purposes of transforming children's healthcare. The network was launched on October 15, 2009 at a meeting of the Institute of Medicine and is called PEDSNet.