Reinventing the Bell Curve

T

tarheel

Guest
I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
Ex- AI DuPont Children's (or, no)
2. When were you born?
Ex- 10/23/1992
3. What are your mutations? (Or, scaled down, do you have DF508?)
Ex.- I only know the one DF508 mutation, not the second
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
Ex- 45/45 (I just left so...)

Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.
 
T

tarheel

Guest
I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
Ex- AI DuPont Children's (or, no)
2. When were you born?
Ex- 10/23/1992
3. What are your mutations? (Or, scaled down, do you have DF508?)
Ex.- I only know the one DF508 mutation, not the second
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
Ex- 45/45 (I just left so...)

Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.
 
T

tarheel

Guest
I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
<br />So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.
<br />
<br />1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
<br /> Ex- AI DuPont Children's (or, no)
<br />2. When were you born?
<br /> Ex- 10/23/1992
<br />3. What are your mutations? (Or, scaled down, do you have DF508?)
<br /> Ex.- I only know the one DF508 mutation, not the second
<br />4. What was your FEV1 %pred when you left your children's center for adult care? What is it now?
<br /> Ex- 45/45 (I just left so...)
<br />
<br />Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.
 
M

mamaScarlett

Active member
good post.
<br />
<br />1. St. Christophers Hospital for Children, Philadelphia, PA.
<br />2.1982
<br />3. DF508/G551S
<br />4. 60/today 70
 
A

alluneedislove

Guest
1. Mayo Clinic Rochester MN
2.1984
3. DF508
4. 70/53
 
A

alluneedislove

Guest
1. Mayo Clinic Rochester MN
2.1984
3. DF508
4. 70/53
 
A

alluneedislove

Guest
1. Mayo Clinic Rochester MN
<br />2.1984
<br />3. DF508
<br />4. 70/53
 
H

hbollotte

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b>
Texas Children's Hospital, Houston, TX
<b>2. When were you born? </b>
9/1982
<b>3. What are your mutations? </b>
DDF508
<b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
probably in the high 80's percent, but now it's around 60%. i do have a three year old little girl, that has definitely played a part in the decline. i wouldn't trade her for the world.
 
H

hbollotte

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b>
Texas Children's Hospital, Houston, TX
<b>2. When were you born? </b>
9/1982
<b>3. What are your mutations? </b>
DDF508
<b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
probably in the high 80's percent, but now it's around 60%. i do have a three year old little girl, that has definitely played a part in the decline. i wouldn't trade her for the world.
 
H

hbollotte

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b>
<br />Texas Children's Hospital, Houston, TX
<br /><b>2. When were you born? </b>
<br />9/1982
<br /><b>3. What are your mutations? </b>
<br />DDF508
<br /><b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
<br />probably in the high 80's percent, but now it's around 60%. i do have a three year old little girl, that has definitely played a part in the decline. i wouldn't trade her for the world.
 
C

crystalina0814

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b> Children's Medical Hospital of Akron (Ohio)
<b>2. When were you born?</b>
8/14/1982
<b>3. What are your mutations?</b> DDF508
<b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
108% in 2000 and 68% currently
 
C

crystalina0814

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b> Children's Medical Hospital of Akron (Ohio)
<b>2. When were you born?</b>
8/14/1982
<b>3. What are your mutations?</b> DDF508
<b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
108% in 2000 and 68% currently
 
C

crystalina0814

New member
<b>1. Where did you primarily recieve your first 18 years of CF care?</b> Children's Medical Hospital of Akron (Ohio)
<br /><b>2. When were you born?</b>
<br />8/14/1982
<br /><b>3. What are your mutations?</b> DDF508
<br /><b>4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? </b>
<br />108% in 2000 and 68% currently
 
T

tarheel

Guest
Thanks everyone for your responses. They're really helpful. So far I've posted this in three sections including this one (teenagers, adults, and transplant) because I know different people go on different sections. I've compiled this info into an excel chart, with no names or anything attached. When I get a good amount of info I'm hoping to post my findings. Hopefully for me and everyone else not treated at the "#1 clinic" in the country the results will be not as skewed as the bell curve of centers arranged by the CF foundation says they will be.
 
T

tarheel

Guest
Thanks everyone for your responses. They're really helpful. So far I've posted this in three sections including this one (teenagers, adults, and transplant) because I know different people go on different sections. I've compiled this info into an excel chart, with no names or anything attached. When I get a good amount of info I'm hoping to post my findings. Hopefully for me and everyone else not treated at the "#1 clinic" in the country the results will be not as skewed as the bell curve of centers arranged by the CF foundation says they will be.
 
T

tarheel

Guest
Thanks everyone for your responses. They're really helpful. So far I've posted this in three sections including this one (teenagers, adults, and transplant) because I know different people go on different sections. I've compiled this info into an excel chart, with no names or anything attached. When I get a good amount of info I'm hoping to post my findings. Hopefully for me and everyone else not treated at the "#1 clinic" in the country the results will be not as skewed as the bell curve of centers arranged by the CF foundation says they will be.
 
T

tarheel

Guest
Oh- no specific data will be released when I make the general post. Thus far, I am planning to announce ranges from other centers (by regions maybe?) and ranges from what Minneapolis releases.
 
T

tarheel

Guest
Oh- no specific data will be released when I make the general post. Thus far, I am planning to announce ranges from other centers (by regions maybe?) and ranges from what Minneapolis releases.
 
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