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.<p><a href="http://acd.od.nih.gov/reports/NCS_WG_FINAL_REPORT.pdf" rel="nofollow">http://acd.od.nih.gov/reports/NCS_WG_FINAL_REPORT.pdf</a><p>edit: this page suggests about 60% of the funding was spent: <a href="https://www.nationalchildrensstudy.gov/about/funding/Pages/interagencycongressionalfunding.aspx" rel="nofollow">https://www.nationalchildrensstudy.gov/about/funding/Pages/i...</a>
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]<p>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>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.<p>[1] "Statement on the National Children’s Study" 12 December 2014<p><a href="http://nih.gov/about/director/12122014_statement_ACD.htm" rel="nofollow">http://nih.gov/about/director/12122014_statement_ACD.htm</a><p>[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<p><a href="http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=18826" rel="nofollow">http://www8.nationalacademies.org/onpinews/newsitem.aspx?Rec...</a>
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%.
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.<p><a href="http://www.cdc.gov/ncbddd/autism/seed.html" rel="nofollow">http://www.cdc.gov/ncbddd/autism/seed.html</a><p>I only know about it, though, because my wife & I participated in it with our daughter (who is not on the autism spectrum): <a href="https://ncseed.org/public/seed2.php" rel="nofollow">https://ncseed.org/public/seed2.php</a><p>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).
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:
<a href="http://www.bostonmagazine.com/health/blog/2013/10/09/framingham-heart-study-celebrates-65th-anniversary/" rel="nofollow">http://www.bostonmagazine.com/health/blog/2013/10/09/framing...</a> )<p>Any good accounts of how the $1.3B was spent?
$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.
A useful link for people actually interested in reading about the study: <a href="https://www.nationalchildrensstudy.gov" rel="nofollow">https://www.nationalchildrensstudy.gov</a><p>Includes protocols, publications that have come out, etc.