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.
I'm sure the money went somewhere. I'd be really curious to see a breakdown of where.
Also, as has been said, it's not clear if all the allocated money has actually been spent.
Monthly interviewing to monitor diet adds another couple hundred dollars.
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
[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...
With research funding recently, it's important that scarce funding be directed to projects that have a reasonable chance at achieving their research goals. This project didn't.
Also the Vanguard study, while a pilot study, was a fairly serious undertaking.
Any good accounts of how the $1.3B was spent?
"There are 112 papers resulting from NCS efforts so far, primarily papers about methodological design issues, but also including preliminary results related to environmental exposures."
- 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)
To use the space program analogy I advanced before, it would be like running Gemini and Mercury, then deciding to scrap the Apollo program because things weren't working out. A lot of science was done just laying the groundwork.
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.
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.
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...
Edit: I'm not anymore. http://www.nationalchildrensstudy.gov/about/funding/Pages/in... appears to be decent for at least the recent past.
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).
Includes protocols, publications that have come out, etc.
