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.

Thursday, December 31, 2015

Going to the Pool...

...or is it really the pools.

When we were kids we loved to go to the pool.  But when we got there, it really wasn't a pool.  There was a baby pool, a junior pool, a lap pool, a shallow pool, a deep pool, a diving tank.  They were separated.  Some of the water sloshed from one to the other, but they were built separately and cabbaged into a complex as the Boomer population grew.

Today we have scientists claiming to share data, but they're not building a pool.  Much like our swimming pool, they are adding different pools to serve different purposes.  Sure, they all contain data and some slosh around, but it's not a pool.  They people using the junior pool are not able to swim into the deep pool.


From the recent "Ask the Experts" session at the ALS Symposium in Orlando, there is a question at around 1:35 about two of the databases in our growing complex of pools...
http://asktheexpert.eventstreaming.tv

The answers weren't very good.  The projects are "different."  "Registry" is a bad word (no kidding). They can work together.  Right.  Show us exactly how the expensive CDC ALS Registry can work with the NIH CReATe Registry.

We need a pool for smart ALS intelligence.  We don't need a complex of segregated and redundant and expensive pools that serve independent needs.

Calling the place we went in the summer "the pool" didn't mean that it was really a pool.



1 comment:

  1. I have certainly come across lots and lots of ALS articles but it is rare to find something that redefines ALS from the common “pretty linear downhill path” myth that many people out there are exposed to. In as much as it may sound understandable not to understand the language of neurologists, I still think you did a good job with your expose’.

    Bernice Cunningham @ Guardian Industries

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