$12 Million Grant To Create First-of-its-Kind Disease Registry

Next Step in Collaborative Efforts for Inflammatory Bowel Disease Aimed at Rapidly Improving Patient Outcomes

Tuesday, October 12, 2010

CINCINNATI – Building on the success of previous efforts among researchers and caregivers to improve the care of chronically ill children, a $12-million grant to Cincinnati Children’s Hospital Medical Center 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.

This extraordinary 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.

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 disease, a condition that affects around 100,000 children in the United States.

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 Dr. 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.

“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 health care 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. In all, nearly 30 different sites taking care of thousands of patients are part of the collaborative network. (A list of the sites is included at the end of the release.)

It is estimated that about 1 million people in the United States have Crohn’s 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.

While this award focuses on the ImproveCareNow network and inflammatory bowel disease, it also serves as a pilot for implementation of a nationwide consortium of academic health centers that propose to share electronic health record 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. PEDSNet is chaired by Christopher Forrest, MD, PhD, Children’s Hospital of Philadelphia, who is an investigator for this project.

Cincinnati Children’s Hospital Medical Center is one of just eight children’s hospitals named to the Honor Roll in U.S. News and World Report’s 2010-11 Best Children’s Hospitals. It is ranked #1 for digestive disorders and highly ranked for its expertise in pulmonology, cancer, neonatology, heart and heart surgery, neurology and neurosurgery, diabetes and endocrinology, orthopedics, kidney disorders and urology. Cincinnati Children’s is one of the top two recipients of pediatric research grants from the National Institutes of Health. It is internationally recognized for quality and transformation work by Leapfrog, The Joint Commission, the Institute for Healthcare Improvement, the federal Agency for Healthcare Research and Quality, and by hospitals and health organizations it works with globally. Additional information can be found at

Locations of GI practices included in this chronic care collaborative include:

  • Atlanta
  • Chapel Hill
  • Cincinnati
  • Columbus
  • Dallas
  • Northern Virginia
  • Delaware
  • Oklahoma
  • Vermont
  • Chicago
  • Las Vegas
  • Madison, Wis.
  • Maine
  • Oakland, Calif.
  • Boston (2)
  • Ann Arbor, Mich.
  • Charlotte, NC
  • Denver
  • Houston
  • Little Rock, Ark.
  • Kansas City
  • Minneapolis
  • Rochester, Minn.
  • Philadelphia
  • Richmond, Va.
  • Roanoke, Va.

Contact Information

Thomas McCormally, , 513-636-9682