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, October 4, 2014

Be Prepared


So far we have some "don't worry" and "we have it covered" and a "we'll encourage" reactions from ALS organizations regarding using a common, universal patient identifier among their newly funded information repositories.

I do worry, and I think that all involved can do more than encourage.

Will ALSA, each of it's IBC grantees, ALSTDI, AnswerALS, Project ALS, and others pledge to use a common, universal patient identifier in their IBC-funded information repositories?

We're not asking that they share data.  We're simply asking that they establish the groundwork so that if anyone would ever decide to share data, we would have a prayer that they would be meaningful. It's collaborate 101. Be prepared.



We've devalued so many words in the fight against ALS over the years -- "promising," "breakthrough," "exciting."  Please don't let "collaborate" be the next.

No comments:

Post a Comment