Children's hospital creates chronic disease registry

Cincinnati Children's Hospital Medical Center will use a $12 million grant to create a disease registry to track chronically ill patients. The searchable database will provide information on symptoms, treatments and outcomes for patients around the country, the Hospital Medical Center announced yesterday.

The grant, awarded by the Agency for Healthcare Research and Quality, focuses on enhancing the ImproveCareNow network--which concentrates on inflammatory bowel disease, a condition affecting nearly 100,000 children in the U.S. 

Now, instead of waiting months or years for peer-reviewed papers to be published for relatively uncommon conditions, information will flow directly from patients' electronic medical records into the registry. Doctors, researchers and patients themselves can access and review the real-time database immediately, notes the Medical Center.

"This initiative allows those in the healthcare system treating these diseases to compare notes frequently and to rapidly implement effective interventions," said Dr. Wallace Crandall, Director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease. By sharing data, doctors improved remission rates for IBD patients by as much as 20 percentage points over the past three years.

The principle investigator for the project, Dr. John Hutton, expects the registry to come on-line in stages over the next three years. "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," Hutton said in a statement. 

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

For more:
- read the press release
- check out this Cincinnati Business Courier article