At my clinic appointment at Renown last week, Dr. Budhecha and her Physician's Assistant Kathy brought me lots of new papers to sign. Usually this would be suspect behavior but on that particular day I had heard the excited whispers on my way into the clinic.
Our little CF clinic was officially accredited last year, which is a HUGE deal and means we are on the same level as Stanford and other respected CF centers. Yes! With this accreditation came the opportunity to be included in the CF Registry. The CF Registry is a list of all the CF patients at accredited CF centers and all of their information, including weight, age, BMI, treatments, specific gene mutations, medications, lung function results, sputum results, bacterias and more. All this information allows doctors and researchers to discover trends, increases in average life expectancies, and possible new and more specific treatments. Last Friday was my day to enroll in the Registry. Yay!
Although I wasn't included in the 2009 registry, I still found the information in the link below very interesting. There's still so much I don't know about this disease but I'm learning more and more every day. Especially with the help of organizations such as this one.
If you're curious about CF trends and statistics check out the 2009 CF Patient Registry Report below!
Patient Registry Report 2009
Very impressed that this was posted at 7am--except that I am thinking it was not because you were up early but rather that you had not yet been to sleep. :) Please keep in mind that should you need a little assist on your BMI, I have an excess and am willing to share..I am such a giver aren't I?
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Aunt Maria
You are so right and you know me so well! I actually wrote it at 3 in the morning... but this wonderful little blog allows me to schedule a post, hence the 7 AM time stamp. You are such a giver and I love you for that!
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