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.
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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.
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