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.

Tuesday, October 7, 2014

Who Is Leading Us To Our Promontory Summit?

And what will we find when we get there?

Thanks to all who have mentioned the use and interest in a Global Unique (or Unifying depending on what you read) Identifier, GUID, for people in research studies. We now know that the NeuroBANK project that received a big bucket of funding from the ALSA windfall will be using GUIDs to key its data.

http://www.neurology.org/content/82/10_Supplement/S46.007


I found the information from the NIH National Database for Autism Research to be a most helpful  backgrounder on the concept --


The words that we are getting from ALS organizations and researchers are reassuring.  Since a wise parent once said, "The best predictor of future behavior is past behavior," we have questions about how this it will really happen.  How will will ALS researchers actually deliver new repositories of ALS data containing this common thread that can potentially relate data from multiple data silos?

Here are some questions --

  • Will the GUID generator be available to all researchers?
  • It appears that it's uncommon but possible for a GUID generator to come up with a previously assigned ID, and someone needs to referee and fix that problem.  Who is doing this small but important function for ALS studies? 
  • There won't be any proprietary pieces to getting and using GUIDs, will there?  The last thing in the world we need is for anyone to "own" or charge others for this simple collaborative piece of information.
  • When the personal information that is fed into the GUID generator is not available for a patient, it looks like a researcher can assign a temporary fake GUID.  Will there be a way to insure that fake GUIDs are consistent among studies or replaced quickly?  These pseudo-GUIDs could defeat the whole purpose.
  • Will people with ALS be told what their GUIDs are?  That would make a nice safety net to make sure that their subsequent studies are using the correct GUID, and maybe some of them will wear their GUIDs proudly as study participants.
  • Who is leading to make sure GUIDs in ALS research happen now?  We are at a critical juncture for ALS research and it's important that things move quickly and smartly, but somebody has to lead!   
If we don't get this right now, we'll pay the price forever. Studies are starting and expanding at this very moment. We're not asking organizations to share data today.  We're simply asking that they don't eliminate that possibility in the future by talking about GUIDs but not delivering now in a way that works for all researchers.

I'm sure that we'll have more questions.  Thanks to all who have enlightened us so far.


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