Saturday, December 17, 2011

Research.

Just a quick note. I realized I had never given out the name of the research study that we enrolled Lukas in before his discharge from Riley. 

The program that Lukas is enrolled in is a lifelong study through the Congenital Heart Surgeon's Society Data Center (CHSSDC), which is based out of The Hospital for Sick Children in Toronto, Ontario, Canada. 

Essentially, the way the program works is that once per year the CHSSDC will contact us either by phone, email, or mail to complete a survey/questionnaire to find out how Lukas is doing. Obviously, we will complete the survey/questionnaire until Lukas is old enough to do so himself. The medical reports and information gathered from each of these annual surveys are then analyzed along with other children whom present with the same heart condition from other centers in order to determine the impact of patient factors and different treatments on results. This analysis then examines overall health status and quality of life. 

You can opt out of the program any time and its completely optional. The mission of this study is so that congenital heart surgeons can compare and improve upon patient care to ensure our little ones are receiving the best treatment possible. 

I've been asked about the program a few times now and I realized I had completely forgotten to post it. I received a Christmas card from the program yesterday and it reminded me. So I wanted to take a moment and share it with you all in case you are interested.

You can find more information about the program, participating centers, read publications, studies and success stories from heart survivors, and even view facts and statistics on the CHSSDC website.
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