Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.
So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.
A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)
No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.
The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.
So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)
What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.
Adventures of a Funky Heart! 