Wednesday, March 14, 2012

It's Time To Wake Up!

Yesterday morning Sleepy received a mass emailing from an ALS organization that was a huge wake-up call. The organization is touting a two-year "study" that it is doing to locate ALS clusters worldwide using an online survey.

That's a very interesting and noble topic. Here's the claim --

Through the information obtained, we will create an extensive database and interactive online map that will identify all suspected or reported clusters, patterns and hotspots of the disease around the world.

Sleepy's no genius, but even Sleepy knows that it would take a remarkable and tremendously expensive effort to deliver on that claim. Today it's easy to write an online survey and map results. It's a lot harder to gather and interpret scientifically sound data that would be useful to scientists. That's one of the reasons why ALS advocates have been working for years to have an epidemiologically sound National ALS Registry at the CDC.

Sleepy's wake-up message for the day is for all patients with ALS in the United States to self-enroll in the U.S. National ALS Registry at
...and after that if you choose to contribute personal information to any other surveys, be aware that "interesting" is not the same thing as "statistically significant."

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