Where’s ours?!?

There is a new publication produced by the Centers for Disease Control (CDC) named The Atlas of Heart Disease Hospitalizations among Medicare Benificiaries. It is available from them in printed form (They say it is available but it is not listed – they could be out at the moment); as a downloadable PDF file; or even as a group of interactive maps.

This is really cool stuff, and leads to the question… Where’s ours? Where’s the Congenital Heart Defect (CHD) statistics?

There are some CHD statistics, but the massive amounts of data needed to compile something like The Atlas for CHDs just isn’t available. It’s too spread out – these records live in medical files in places like Johns Hopkins Hospital, The Mayo Clinic, Denver Children’s Hospital… and the list goes on and on. Some of those records even hide in the files of a small community hospital, the only facility¬† in the hometown of a newborn.

Even though we are working for the Congenital Heart Futures Act and the Registry that the legislation will create, change won’t happen overnight. The actual database has to be created first – a database that can handle approximately 40,000 new entries per year with numerous variables. And once created, such a database will be empty – will designers choose to include records that previously exist? I’d guess yes, but no one will be assigned to cull the records from America’s hospitals and doctors offices. There are just too many. What would probably happen is that the system would “go live” on a certain date and everyone who reports a CHD birth after that date, the information would be entered. At their next appointment with their Cardiologist, CHDers will be asked if they would consent for their records to be entered in the database. Hopefully most of us would say yes.

It would be a few years before there was enough data to study, but once that occurs, I’m hopeful there would be a lot of research done.

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2 Responses to “Where’s ours?!?”

  1. Rhonda Says:

    Simply unbelievable! The #1 birth defect, just utterly amazing. We are working to change this!! Thanks Funky Heart!

    Rhonda

  2. Rhonda Says:

    You can bet I will say YES!

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