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U.S. Child Study Canceled After $1.3B

bloomberg.com

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Re: U.S. Child Study Canceled After $1.3B

#21

Post by Fomite »

refurb wrote: post #16
lpolovets wrote: post #8

$1.3b to track 100k kids for 7 years. That's about $2k/child/year, which sounds insanely expensive. How can a study cost that much? You could buy each participant an iPad _every_ year and given them $100/month for filling out surveys, or you could hire 1 researcher for every 25 kids, which sounds grossly inefficient -- and you'd still be under $1.3b for 7 years.

Hold on! It says the study never went beyond a small pilot? Where did the $1.3B go?

The "small pilot" was a 40 center study enrolling 1,750 pregnant women. There are some fixed costs to a study like that, especially if they're supposed to also apply to the larger study, and there has been a lot of work done in developing the appropriate methods for the NCS - over 100 research papers worth of it.

Also, as has been said, it's not clear if all the allocated money has actually been spent.

Re: U.S. Child Study Canceled After $1.3B

#23

Post by Fomite »

sauere wrote: post #10

$1.3b... wow. I hate to say it but: this is what you get with Goverment in charge of research.

Perhaps you'd like to discuss with us some of the doubtlessly myriad inexpensive long term cohort studies run entirely by private industry?

Or outline the clear problems being suffered by those poor Government fools in Scandinavia running birth cohort studies? Where, perish the thought, Government is not only in charge of research but healthcare.

Re: U.S. Child Study Canceled After $1.3B

#24

Post by lpolovets »

Fomite wrote: post #17
lpolovets wrote: post #8

$1.3b to track 100k kids for 7 years. That's about $2k/child/year, which sounds insanely expensive. How can a study cost that much? You could buy each participant an iPad _every_ year and given them $100/month for filling out surveys, or you could hire 1 researcher for every 25 kids, which sounds grossly inefficient -- and you'd still be under $1.3b for 7 years.

Surveys don't cut it. There's clinical costs associated with each subject - getting accurate clinical data, biomarkers, needing the infrastructure to store biological specimens for decades. There's methodological issues, planning that needs to get figured out, and the people who do that are not cheap. The NCS was planned and known to be a massive undertaking, to try to ask some very serious questions about health tha…

I totally agree with you that this is a complex project with a lot of costs. Still, it's hard for me to fathom where so much money could go. I mean, if you give 100k people 5 top-of-the-line wearables over 7 years (maybe $1500/person); hire 250 experts, each of whom charges $250k/year; and allocate $15m/year on AWS hosting bills... you still wind up at "only" about $700m.

I'm sure the money went somewhere. I'd be really curious to see a breakdown of where.

Re: U.S. Child Study Canceled After $1.3B

#25

Post by Fomite »

lpolovets wrote: post #24
Fomite wrote: post #17

Earlier quoted context omitted.

Surveys don't cut it. There's clinical costs associated with each subject - getting accurate clinical data, biomarkers, needing the infrastructure to store biological specimens for decades. There's methodological issues, planning that needs to get figured out, and the people who do that are not cheap. The NCS was planned and known to be a massive undertaking, to try to ask some very serious questions about health tha…

I totally agree with you that this is a complex project with a lot of costs. Still, it's hard for me to fathom where so much money could go. I mean, if you give 100k people 5 top-of-the-line wearables over 7 years (maybe $1500/person); hire 250 experts, each of whom charges $250k/year; and allocate $15m/year on AWS hosting bills... you still wind up at "only" about $700m. I'm sure the money went somewhere. I'd be rea…

http://www.nationalchildrensstudy.gov/about/funding/Pages/in...

Table down at the bottom. As of 2011, 60% of the spend money was spent at the study sites themselves. From the text of that report, it sounds like recruitment was very expensive, which isn't surprising.

Re: U.S. Child Study Canceled After $1.3B

#26

Post by xrange »

earljwagner wrote: post #9

Wow, $1.3 billion is a huge amount for a single study. For comparison, the Framingham Heart Study, going on 65 years, has an annual budget of about $10 million: (Concerns that the 2013 sequester would cut about $4 million, about 40% of its budget here: http://www.bostonmagazine.com/health/blog/2013/10/09/framing... ) Any good accounts of how the $1.3B was spent?

Am I misunderstanding things? From reading the linked article, there was $1.3 billion spent studying whether we should actually undertake the study. Not the actual study itself (which presumably would cost significantly more?)

Re: U.S. Child Study Canceled After $1.3B

#27

Post by Fomite »

themartorana wrote: post #12
sauere wrote: post #10

$1.3b... wow. I hate to say it but: this is what you get with Goverment in charge of research.

No no wrong wrong please stop applying blanket statements to things like this. DARPA and NASA alone have benefitted humanity and science in ways hard to grasp - from the Internet to vaccines to the microwave frackin' oven. Please do not lower yourself to blanket statements like this. It's true, government projects sometimes become massive boondoggles like this (or say, the JSF) but just as often the benefits are enor…

In fairness to the government, private industry has their own share of blame in the JSF.

Re: U.S. Child Study Canceled After $1.3B

#28

Post by preinheimer »

xrange wrote: post #26
earljwagner wrote: post #9

Wow, $1.3 billion is a huge amount for a single study. For comparison, the Framingham Heart Study, going on 65 years, has an annual budget of about $10 million: (Concerns that the 2013 sequester would cut about $4 million, about 40% of its budget here: http://www.bostonmagazine.com/health/blog/2013/10/09/framing... ) Any good accounts of how the $1.3B was spent?

Am I misunderstanding things? From reading the linked article, there was $1.3 billion spent studying whether we should actually undertake the study. Not the actual study itself (which presumably would cost significantly more?)

They spent money on a lot of things:

- Trying to figure out how the heck to enroll people (vanguard study)

- Decide which variables are worth tracking, and actually trackable. Every variable they track will cost a tonne, if they don't track a variable and decide they need later it's too late.

- Figure out how long they will successfully be able to track people, will they lose 5% a year? 10%? Is there a huge cliff when kids turn 12 where they all move? WHO KNOWS?

- Actually enrolling people and tracking the variables that seemed worthwhile

- Revising surveys based on stuff they're learning.

It was to be a huge study, to be honest if completed I think it would have been the landmark medical advancements of our time.

(I briefly worked on one small piece of software supporting one small aspect of the study)

Re: U.S. Child Study Canceled After $1.3B

#29

Post by mkramlich »

autokad wrote: post #5
tokenadult wrote: post #2

This is really a drag, because I was hoping that study (which has been on the wish list of a lot of scientists for a long time) would be fully funded and operated over the long term. Prospective, longitudinal study design is the only valid way to answer a number of important questions about child development. On the other hand, the reason this particular study project was cancelled was a legitimate reason: "The study…

i would have hoped they figured that out 1.2 billion $ ago

if they were spending their own hard-earned cash they most likely would have been more careful like that

Re: U.S. Child Study Canceled After $1.3B

#30

Post by eitally »

On the other hand, the SEED autism study is still going strong, currently in phase two after the first five year phase ended in 2012.

http://www.cdc.gov/ncbddd/autism/seed.html

I only know about it, though, because my wife & I participated in it with our daughter (who is not on the autism spectrum): https://ncseed.org/public/seed2.php

It seems the organizers are contacting the parents of every child born in the 10 eligible counties of North Carolina, so they must be seeking quite a large number of participants (and this is only one of the five states).

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