Comment by tokenadult | Hacker News Reader

Comment by tokenadult | Hacker News Reader

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

[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...

I am glad to see that a decision was made to not throw good money into a bad project. They realized that the study as designed was infeasible. I did not see specific reasons but I can only imagine the difficulty of tracking 100,000 individuals through roughly two decades of life, and accounting for the untold number of uncontroled variables that would be present in such an effort.

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.

It should be noted that there are a number of birth cohort studies ongoing in Europe, where single payer healthcare makes it dramatically easier to follow people.

AFAIK, in the EU, the UK is the only country that has single-payer healthcare (http://en.m.wikipedia.org/wiki/Single-payer_health_care#Sing...), so I doubt that is the deciding factor.

My money would be on a) more people having insurance, b) having resident registration (that database will have errors, but in cohort studies, people spend lots of time trying to correct that for those in a cohort), c) people, in general, to have more trust in government, certainly where it concerns healthcare, and d) government more willing to look ahead further. I do not have supporting data for c) and d)

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

A fair amount of research has gone into figuring out the study - the NCS was a major undertaking, involved laying down a lot of logistics, figuring out methodological issues, etc.

Also the Vanguard study, while a pilot study, was a fairly serious undertaking.

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

Yes, they would have been very careful to only do studies that make their funders happy, and which will get them more money.

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.

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

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.

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