You Are Smarter Than That

Over a decade ago we fought hard for a good ALS registry for the US -- a sound epidemiological census of people with ALS that would retain people's data and inform the science.

We fought very hard for it. We got it generous funding.  Perhaps we got too much funding for it.

After all these years and $78,000,000, it has simply not delivered.

• The Registry has found a maximum of 15,927 people with ALS in the US (in its recent report that reflects 2014 data).  That's a number that nobody believes.  The CDC continues to depict ALS as white guys' disease based on its data.
• This report was published in October on registry completeness,  It's a smoking gun. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5815913/  Whoa.  The National ALS Registry only found 57% of the people with ALS that smaller studies found.  Even more concerning was that the 43% the Registry didn't find were more people of color, more Hispanic, younger.
• Look at scientific ALS papers that cite ALS data for the US.  They simply don't use this Registry's data.
• For over a decade the project has permitted scope creep rather than focus and deliver its primary purpose -- "to better describe the incidence and prevalence of ALS in the United States."  Shoot, it doesn't even gather the data needed to calculate incidence.
• The CDC can brag about using the Registry as an emailing system for clinical research notification, but in reality only a tiny percentage of enrolling ALS trials are included.  Even the scope creep isn't done well.

ALSA is telling you to ask for another $10,000,000 for this project.  You are being told that it's a success.  You are smarter than that.  

There are many lesser options to ask your legislators to consider --

• Cease funding this project
• Use the neurological disease surveillance included in 21st Century Cures to track ALS epidemiology (provided it does not use the same failed processes of the ALS Registry)
• Decrease funding to well under $5.000,000 to allow basic operation of the ALS Registry

Do not let the tab for this disappointment grow to $88,000,000 as part of the charade that it is a success.  You are smarter than that.  Please speak up to legislators who are drawing up appropriations now.