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 18, 2017

It's Time For Some Hard Facts



If ever a project should be dealing in facts, it's one that is supposed to be gathering data on the prevalence and incidence of ALS -- the CDC's ALS Registry.

The project has not delivered on its core mission well, and in the past few years the claim of success has been in an area of its scope creep.


Let's look at some facts.

This morning there were 76 open, recruiting clinical trials for ALS at clinicaltrials.gov.
Of those, 39 are interventional trials and the rest are observational.

Here is the list of the 25 total trials included in the ALS Registry's email notification in the last four years -- https://wwwn.cdc.gov/als/ALSResearchNotificationClinicalTrialsStudies.aspx .

Fact:  Just seven (9%) of the 76 currently recruiting trials are in the CDC notification.
Fact:  Just two (5%) of the 39 currently recruiting interventional trials are in the CDC notification.

Fact:  This is not a success story.






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