Rather than using the Patient Registry data to recognize if your CF care center is above or below "average" on outcome measures like lung function, check out what's possible! Below is the data from 2015. These are the average lung function numbers at the Pediatric CF Care Centers across the US available on the CFF website. Why strive for "average" when you can see what's possible!
The range of average lung function from accredited CF Care Center to accredited CF care center spans from 105.8 to 76.8. Tri-Services Military Cystic Fibrosis Center has an average lung function of 105.8, while West Virginia University Charleston Division has an average lung function of 76.8. There are plenty of "guesses" as to why this variation exists, but it's time to learn and improve. We need to move past guessing and assumptions. I appreciate that socioeconomic differences exist. I appreciate that resources from center to center differ. The fact remains that until we focus effort on learning from one another and improving, outcomes in the CF community will not change. I'm not ok with with. Where do you stand?
This is what I'm talking about in my last post when I mention "variation". What if we could all learn from what the best centers are doing, the centers with the highest outcomes, to try to achieve things that aren't currently possible in other center with the current standard of care! It's time for us to become impatient, require this change, this learning, this opportunity to change the trajectory of our kids lives.
Click on the upper righthand corner of this image below to search for your center to see where you stand. Then tell me where you'd like to go from here!