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 6, 2012

Seldom Am I This Speechless

This week the PRO-ACT database was announced.  It is wonderful that ALS clinical trial data will be shared and opened up for researchers to access. 



One of the sponsoring organizations had a big PRO_ACT blurb on its facebook page.  It certainly was a logical place for someone to ask if there might be some synergy between the PRO-ACT database of ALS clinical trial patients' data and the U.S. National ALS Registry of ALS patients' data.  After all, this is the 21st Century and data silos should be a thing of the past, right?

The exchange below leaves me at a loss for words.


The National ALS Registry is not a database of information for patients and their families.  It is a registry of virtually all cases of ALS in the United States.  It is meant to be a repository that can be useful for researchers.  It is an epidemiological tool.

There are two clear problems here --
1. The messaging about the U.S. National ALS Registry still isn't working.
2. Our ALS organizations still don't talk to each other very well.

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