For over a decade, some of us have worked hard to get a good census of people with ALS.
My theme was, "We'll never connect the dots if we don't start collecting the dots." I started the website www.alscounts.com in 2008 to help make the point.
And I worked hard with others to enable the ALS Association and the CDC to deliver what was to have been a population-based US Registry.
So many years and over $70,000,000 later, here we are.
But did it count all the noses? No.
Does it know how many noses it missed? No.
Does it know which ones it missed? No.
Does it make broad demographic generalizations based on the ones it did locate? Yes.
Which dots did they collect?
Which dots are missing?
Is the epidemiology of the missed dots the same as of the located dots?
As an ALS neuroscientist so aptly said to me, "We don't know what we don't know."
And that's a problem -- a very expensive problem.