This is the data reported to the CFF Registry for the pediatric care centers you are considering and/or being discussed in this thread for the year 2008 (most recent year available):
<br />
<br /><b>CHOP</b> ...this is a transplant center so will get sicker patients.
<br />fev1: 100%
<br />bmi: 54.8%
<br />guidelines of care: 60.3%
<br />
<br /><b>Hopkins</b> ...also a transplant center.
<br />fev1: 88.3%
<br />bmi: 49%
<br />guidelines of care: 73.7%
<br />
<br /><b>DuPont</b>
<br />fev1: 87.4%
<br />bmi: 48.4%
<br />guidelines of care: 42.9%
<br />
<br /><b>UNC</b> ...also a transplant center
<br />fev1: 89.6
<br />bmi: 43.9%
<br />guidelines of care: 86.2%
<br />
<br /><b>National Average</b>
<br />fev1: 90.2%
<br />bmi: 48.4%
<br />guidelines of care: 68.6%
<br />
<br />This data doesn't tell the whole story of how these centers add up. However, it's valuable to know; a reflection of the average health of the children that receive their care there.
<br />
<br />Our center director has told me that Hopkins has an interest in 'rare mutation' cases. Our family's circumstances w/my daughter having an unknown mutation and my son's status being unknown for quite a long time warranted a discussion about this. We've also seen here that CHOP does not seem quite as open-minded to 'atypical' cases or rare mutations; but they have an extremely good program overall... your experience will vary based on your child's individual circumstances perhaps.
<br />
<br />You can access all of these statistics yourself on cff.org website using the link for care center data (you'll have to register as a user for the site if you haven't yet.)
<br />
<br /><b>CHOP</b> ...this is a transplant center so will get sicker patients.
<br />fev1: 100%
<br />bmi: 54.8%
<br />guidelines of care: 60.3%
<br />
<br /><b>Hopkins</b> ...also a transplant center.
<br />fev1: 88.3%
<br />bmi: 49%
<br />guidelines of care: 73.7%
<br />
<br /><b>DuPont</b>
<br />fev1: 87.4%
<br />bmi: 48.4%
<br />guidelines of care: 42.9%
<br />
<br /><b>UNC</b> ...also a transplant center
<br />fev1: 89.6
<br />bmi: 43.9%
<br />guidelines of care: 86.2%
<br />
<br /><b>National Average</b>
<br />fev1: 90.2%
<br />bmi: 48.4%
<br />guidelines of care: 68.6%
<br />
<br />This data doesn't tell the whole story of how these centers add up. However, it's valuable to know; a reflection of the average health of the children that receive their care there.
<br />
<br />Our center director has told me that Hopkins has an interest in 'rare mutation' cases. Our family's circumstances w/my daughter having an unknown mutation and my son's status being unknown for quite a long time warranted a discussion about this. We've also seen here that CHOP does not seem quite as open-minded to 'atypical' cases or rare mutations; but they have an extremely good program overall... your experience will vary based on your child's individual circumstances perhaps.
<br />
<br />You can access all of these statistics yourself on cff.org website using the link for care center data (you'll have to register as a user for the site if you haven't yet.)
The only reason he was tested extensively is because I have cf. They found a 2nd mutation which is assoc w/ PS and mild pulmonary involvement. Both CHOP and all other future care have treated him agressively as they would any other cf patient which is what we want. I don't want him treated different because in the long run I know cf can become pretty darn typical very fast. Prevention is key!