ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, July 6, 2013

We Have Three Very SImple Questions Regarding The CDC's ATSDR National ALS Registry

What percentage of the total patients in the Registry have been identified...

Q1: Both by your passive data mining and by self-enrollment?

Q2: By passive data mining only and not by self-enrollment?

Q3: By self-enrollment only and not by passive data mining?

How else are we to know the effectiveness of the self-enrollment efforts?  Whoops, I guess that's a fourth question (but only if we can't get answers to Q1, Q2, and Q3).

And if we can't get the answers because of some OMB policy, then yet another question is whether the OMB gag order is OMB's alone or whether there was an agreement presented to OMB by the CDC which prevented this disclosure.

Yes, it turned out to be five questions, but there are only three if we get the simple (and important) responses to Q1, Q2, and Q3.


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