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.

Wednesday, October 9, 2013

This Is Putting Heads Together?

  1. A few weeks ago Team Gleason assembled an unprecedented group of scientists, clinicians, and organizations (at Team Gleason expense) to put their heads together and fix the fight against ALS.  The MDA was among the organizations represented.
  2. Throughout the Team Gleason Summit, conversations touched on information needs and the data concepts that would be central to speeding the development of therapies.  It was a persistent thread.  
  3. As I listened on the webcast, I didn't hear a peep from the MDA about information or data.  Not a word.  Nothing.
  4. Today we see this big announcement from the MDA --  http://mda.org/media/press-releases/quintiles-selected-muscular-dystrophy-association-develop-us-disease-registry


So much for putting heads together.  I'm not sure that Team Gleason got its money's worth.

2 comments:

  1. CDC has an ALS Registry. NEALS has the PRO-ACT database. MDA has a Registry. Somebody call Walter O'Brien!

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  2. Ok, MDA recently was granted a a half-million-dollar noncompetitive contract from the CDC for outreach and awareness for its ALS registry. How could they announce their own registry without any mention of how it fits in with the CDC's registry? Or does it? So much for outreach and awareness.

    In a year what will we have? WIll it be the information that scientists need, or will it be a landscape of expensive, incomplete silos?



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