#ALSregistry meeting thread

What we see so far. Still has not started.

Starting 815 EDT

Mehta agenda

Nothing about better description of prevalence and incidence of ALS in the US. Primary intent of this registry.

Rob Tison will be glad as he looks down from heaven that they finally decided to compare CDC registry data to Massachusetts data. That was 10+ years ago that he asked for that.

We expected "annual" MMWR prevalence report for 2016 data last November... b4 I ever heard of Covid-19. I wish they had told us then that it was going to be late.

Still obscure

Brooks describes Covid-19 ALS studies and what needs to be done. What system is nimble enough to do these studies? You have to work fast and we don't seem to have nimble from CDC ALS Registry.

And for next year maybe we can give people all the background material BEFORE the meeting so that we don't have so many trips down memory lane.