Couldn't agree more with this! I was diagnosed on 12/8/2010 and the frustration I have related to ALS patient data/information being collected in hundreds of "stovepipes" and never shared is just terrible. With the technologies available to us all today for "connecting the dots" and identifying relationships between seemingly disparate data/information sets - someone might come up with an answer easily that has been missed for years.Imagine the amount of data/information available from the BIOGEN EMPOWER Dexpramipexole Study of 943 patients for over 18 months - maybe we can give it to the CIA analysts who "connect the dots" for a living?
The exchanged described in this blog a few weeks ago http://als-advocacy.blogspot.com/2012/12/seldom-am-i-this-speechless.html was very revealing. Clearly the people touting the PRO-ACT database didn't know about the CDC's ALS Registry. And now the CDC wants to do a biorepository. There was once registry for veterans and a bioregistry. One gentleman with ALS told me that he feels like he has already left tissue all over the country. ALS -- the disease of lots of little data silos that don't talk to each other. ALS -- the disease of lots of little organizations that don't talk to each other.
What do we need to sign so that all of the data/information that has been collected in "stovepipes" over the last many years can be shared globally with ANYONE interested in finding a treatment or cure for ALS? Have never seen TRUER words than these: ALS -- the disease of lots of little data silos that don't talk to each other. ALS -- the disease of lots of little organizations that don't talk to each other.This is madness ...
Perhaps rather than all of the feckless patient bills-of-rights that have been written, it would be more important to have a simple statement that every person with ALS could sign: "I demand that my data be shared with medical researchers." Any stakeholders willing to stand up for a patient right that would actually force some people to change the status quo?