Research Cardiology: getting better data

Note: A lot of today’s links go to an abstract of longer articles. Linking to the full article requires a subscription (in other words: money, and usually a good bit of it). My apologies!

Not every battle against Congenital Heart Defects is fought in the Operating Room.

I’ve written before about the need for a national Congenital Heart Defect Registry, and how the Adult Congenital Heart Association (ACHA) is working towards that goal. We’ve had some progress in classifying heart defects, with the Aristotle Complexity Score for surgical procedures. And the next version of the Aristotle Score hopes to use even better data to make the “score” more accurate.

The International Pediatric and Congenital Cardiac Code (IPCCC) and The International Classification of Diseases (ICD) have both developed standards for classifying Congenital Heart Defects.  But defects are often misclassified. How can you reasonably compile a database if you can’t even agree (or correctly classify) the data?

Obviously, verification of any data can improve it even more. The Congenital Heart Surgeons’ Society Data Center seems to get it right. For further reading, you can download a FREE .pdf file from the Data Center titled “Making Sense of Congenital Cardiac Disease”.

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One Response to “Research Cardiology: getting better data”

  1. Wendy Says:

    Wow, this was eye opening and VERY interesting. I had no idea this existed and was able to look up the procedures that my son has had and will have. It’s crazy to me that a heart transplant isn’t even close to the highest procedure….but I knew the HLHS surgeries were very complex. Thanks for sharing a great piece of info that I otherwise would never have found!


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