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, October 2, 2014

NOW Is The Time To Get This Right! Collaborate.

The ALS Ice Bucket Challenge has primed the pump and we're starting to see some projects leave the starting gates.

At least three of the new ALS research initiatives involve people with ALS having their genomes mapped and a wealth of information assembled on each participant for researchers to mine.

Will it be business as usual?

Picture this --

Joe Doe has ALS.  He volunteers for Project Purple and is assigned a de-identified code 13579.  Joe leaves tissue and his genome is mapped. He leaves all kinds of health data that will be mined by researchers.  Joe gets a device that will measure his movements and the disease trajectory at periodic intervals.  Joe's tissue can be used as a lab model of ALS.  Project Purple even promises that other researchers will have access to its data.  Cool. 
Joe hears about Project Black and is assigned a code of 24680 when he is accepted into Project Black.  Joe leaves tissue and his genome is mapped.  He leaves all kinds of health data that will be mined by researchers, with many of the types of information different from what he gave Project Purple.  Joe will be contacted by Project Black researchers from time to time for more data and perhaps to be approached as a candidate for trials needing his variety of ALS, and again his tissue can become a lab model. Great. 
Wanting to give back as much as possible to the fight against ALS, Joe asks to be a part of Project Red that just got started in the U.S. as a result of some new funding.  Joe is given research patient  code ABCD12 and gives some tissue and his genome is mapped.  Joe becomes part of a huge data global bank of genetic mapping of people with ALS.  Awesome.

OK, we know that organizations and researchers love to say that they collaborate but they seldom really do.  Business as usual gives us three silos that don't even know whether Joe is in one, two, or three projects' gold mines of data.  And did they duplicate expensive screening processes that they could have shared?  Who knows?

Now's the time to put a very easy collaboration concept to good use.  Let's get this right. Now.

If all three projects would simply agree to share a research identifier for a person with ALS, think of the potential that we would have for the future.  If Joe were patient 265371 in all three projects, that would be one small step that would turn into a giant leap in the fight against ALS.  It would finally be possible to get inter-silo insights.

This is about as easy as collaboration gets.  This is about as valuable as collaboration gets.

We must get this right.  We must do it now.


  1. Several years ago the NIH, established the Global Unique Identifier (GUID) to provide a unique identifier to link patients, health records, and biosamples among all research projects receiving NIH funding.

    Using this existing, proven GUID code to register pALS with all ALS Research Projects will achieve this objective.

  2. Beyond just these 3 studies, there is a simple way to facilitate this desired collaboration and avoid the old "silos." All future ALS studies should be required to identify participating patients using a "global unifying ID (GUID)." Each patient has their own unique GUID and carries this with them into every study. This way we could always track the same patients across studies and databases. We will do this in our newly NIH funded Rare Disease Clinical Research Network called CREATE (Clinical Research in ALS and Related Disorders for Therapeutic Development). Alex Sherman is doing it in his national ALS database (called Neurobank). In my opinion, studies should not be funded anymore unless they agree to use GUIDs