
U.S. Child Study Canceled After $1.3B - Multics
http://www.bloomberg.com/news/2014-12-15/huge-u-s-child-health-study-canceled-after-1-3-billion.html
======
anigbrowl
After reading the very concise and accessible report on the state of the
study, I got the impression that the $1.3 billion had been allocated by
Congress but that little or none of it had been spent, basically because the
study design never got close enough to being finalized and approved for any
large-scale data acquisition to even take place. Unless I'm quite mistaken,
the $1.3 billion has been parked on the NIH's balance sheet for the last
several years rather than being lost.

[http://acd.od.nih.gov/reports/NCS_WG_FINAL_REPORT.pdf](http://acd.od.nih.gov/reports/NCS_WG_FINAL_REPORT.pdf)

edit: this page suggests about 60% of the funding was spent:
[https://www.nationalchildrensstudy.gov/about/funding/Pages/i...](https://www.nationalchildrensstudy.gov/about/funding/Pages/interagencycongressionalfunding.aspx)

~~~
Fomite
I too am having trouble finding "Spent" vs. "Allocated".

Edit: I'm not anymore.
[http://www.nationalchildrensstudy.gov/about/funding/Pages/in...](http://www.nationalchildrensstudy.gov/about/funding/Pages/interagencycongressionalfunding.aspx)
appears to be decent for at least the recent past.

------
tokenadult
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 'as currently designed is not
feasible,' Collins said in a Dec. 12 statement on the NIH’s website."[1] That
conclusion was based on concerns raised by the National Academy of Sciences
when reviewing the pilot phase of the study.[2]

So of course the next step for scientists would be to learn whatever can be
learned from the pilot program in the just-cancelled study, and then design a
new study and try again. I will highly support research projects of this kind,
which now will have more benefit to my grandchildren than to my children, who
are already almost fully grown up into adulthood.

P.S. A big hat tip to the Hacker News participant who found this news story,
which is well reported and links to key online documents, for finding a great
source about an important story. The key online documents are press releases
from government offices, but this story adds a journalist's contacts with
other sources and establishes context for the latest news on the study.

[1] "Statement on the National Children’s Study" 12 December 2014

[http://nih.gov/about/director/12122014_statement_ACD.htm](http://nih.gov/about/director/12122014_statement_ACD.htm)

[2] "National Children’s Study Has Great Potential to Expand Understanding of
Children’s Health and Well-Being, But Key Design Elements Need Further
Development for Study to Be Successful" 16 June 2014

[http://www8.nationalacademies.org/onpinews/newsitem.aspx?Rec...](http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=18826)

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

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

~~~
Fomite
Most of the researchers are U.S. citizens, so in effect they are.

Also, most NIH-funded researchers have gotten quite used to continual budget
cuts, uncertainty, and needing to make every cent count. "Expensive" does not
equal wasteful.

~~~
mkramlich
1.3B$ to observe a bunch of kids growing up, taking metrics of them
periodically, sounds like some serious inefficiencies going on there

~~~
Fomite
Compared to what? What some folks in SV will blow $1.3 billion on?

Cohort studies like this one have led to some major advancements in our
understanding of disease - if you know anyone who takes aspirin to reduce
their risk of cardiovascular disease, for example, that came out of a cohort
study. There is a _tremendous_ amount we don't know about the development of
diseases in childhood, life-course trajectories, the effects of environmental
exposures that need well conducted, large sized studies - the large bit is
important, as they need statistical power if anything will meaningfully change
in terms of policy.

------
jamesrom
Keep perspective: 3% of the budget was used for risk analysis. The conclusion
of that research was that it's not worth spending the remaining 97%.

~~~
javert
Where did you find that? Citation? And are you saying that the 97% of the 1.3
billion will be returned to public coffers, unspent?

------
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](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](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).

------
earljwagner
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...](http://www.bostonmagazine.com/health/blog/2013/10/09/framingham-
heart-study-celebrates-65th-anniversary/) )

Any good accounts of how the $1.3B was spent?

~~~
xrange
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?)

~~~
preinheimer
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)

~~~
earljwagner
Thanks for the insights. OK, that makes more sense and I can see the utility
of the published results.

Now it sounds to me like when a corporation or large federal agency fails in
implementing a new or upgraded software system because the process has become
unmanageable. From your perspective in both worlds (setting aside the results
published so far) does that analogy capture it?

~~~
Fomite
I don't think it quite captures it, because the NCS might not be
"unmanageable", but simply too expensive for what people think its budget will
be, or not be able to achieve some of its goals (good followup, a nationally
representative sample, etc.).

It would be more like...if you rolled out an upgraded software system in a
couple departments, collected some feedback, and decided not to go with the
company wide rollout.

------
lpolovets
$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.

~~~
Fomite
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 that are hard to get out without long-term
cohort studies.

~~~
lpolovets
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.

~~~
Fomite
[http://www.nationalchildrensstudy.gov/about/funding/Pages/in...](http://www.nationalchildrensstudy.gov/about/funding/Pages/interagencycongressionalfunding.aspx)

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.

------
Fomite
A useful link for people actually interested in reading about the study:
[https://www.nationalchildrensstudy.gov](https://www.nationalchildrensstudy.gov)

Includes protocols, publications that have come out, etc.

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

~~~
themartorana
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 enormous.

~~~
sixQuarks
are you kidding me? NASA is your idea of a successful lean government project?
Elon Musk is doing what NASA couldn't with a tiny fraction of their budget.

~~~
recondite
And how far along would Elon Musk and SpaceX be without the decades of
research, development, testing, and real-world experimentation done previously
by NASA and other government R&D efforts?

Your argument presupposes SpaceX hasn't benefited from the previous work done
before. Which they have, immensely. Stop reducing complex systems into simple
certainties. It's insulting to the entire community of scientists that have
been dedicated to rocket and space research over the past 70 years.

