Cincinnati Children's Blog

Enhanced registry a new chapter in chronic care

Imagine if a doctor, treating a young patient with a chronic illness, could have instant access to information from others all around the U.S. on the latest treatments and protocols, how their patients are responding, and what practices are leading to better outcomes.

Imagine if that information were available in real time, as the patients were going through their treatments, and could include data from not merely a few cases in a small study group, but rather tens of thousands of cases, providing a vast amount of information about what is working and what isn’t.

That would be an immensely powerful tool in the practice of medicine.

Such a tool is exactly the goal of a team we’re leading at Cincinnati Children’s that recently received a $12-million grant from the federal Agency for Healthcare Research and Quality to build a first-of-its-kind, fully interactive system that will track data about the treatment of inflammatory bowel disease (IBD), which afflicts about 100,000 children in the United States.

Using this system, participating doctors anywhere in the country will have the electronic medical records for their IBD patients flow directly into a central database where it may be accessed securely and confidentially by other doctors and researchers looking for best practices, improved outcomes, trends in treatments, and generally a shared information pool about this chronic condition.

The database project is the next step in what has already proven to be a successful collaboration on a smaller scale among a number of physicians and caregivers.  By sharing notes and comparing outcomes over the past four years through a network called ImproveCareNow, doctors found that they could dramatically improve remission rates for IBD patients.

The new, enhanced registry, will provide a much larger, searchable body of knowledge about which procedures are having the most positive impacts on patients.

This is great news for children suffering from IBD.  But it may be much more than that.

Assuming that the project does, indeed, demonstrate that the comprehensive gathering and sharing of large volumes of data in a fully interactive framework is a much better and faster way of determining best practices and getting them into widespread clinical use, the same approach then could be used for any number of other chronic conditions.  As such, the IBD enhanced registry could be the first step on a new path leading to more collaborative medicine, and a greater chance of improved outcomes.

Many will be watching to see how well it works.  Stay tuned.


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