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.

Saturday, February 13, 2016

Here A Registry, There A Registry, Everywhere A Registry - Your Tax Dollars In Action

Imagine the taxpayer revolt if two different government-funded projects built two huge new, expensive, duplicate highways that were completely parallel... and then we had to pay extra to figure out how to hook them together.


We have an ALS Registry built by the CDC and funded by us, the American taxpayers.

We have a separate CReATe project largely underwritten by the NIH and funded by us, the American taxpayers.

And then we American taxpayers had to pay to have a brochure written to try to explain away the difference:

https://www.rarediseasesnetwork.org/cms/Portals/5/Documents/CReATe%20Connect%20Handout%2011-30-15.pdf


How is CReATe Connect different from the National ALS Registry? 
While CReATe Connect is part of the RDCRN Contact Registry, it is quite distinct from the National ALS Registry that is maintained by the U.S. Centers for Disease Control and Prevention (CDC). CReATe Connect is not meant to compete with the National ALS Registry, but rather to work alongside it. By facilitating direct communication between physicians/scientists and patients with ALS and related diseases, CReATe Connect will help to advance the goals of the National ALS Registry. 
It is important to understand that participation in CReATe Connect does not mean that you have also enrolled in the National ALS Registry. The registries are different and information in CReATe Connect is not shared with the National ALS Registry. 
If you are a person with ALS, we encourage you to sign up for both registries. To enroll in the National ALS Registry, visit the CDC’s ALS Registry website at www.cdc.gov/als

Sure they're different, just like our two expensive, redundant highways are different.  That doesn't make them smart.  That doesn't make them right.  That doesn't make them patient-centric.  That doesn't make them good use of the American taxpayers' funds.

This is absurd.  The above rationalization is absurd.  And we're paying for it.

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