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 28, 2020

But It Gets Such Good Reviews


Suppose you belong to a service that autoships products to you occasionally. 

You seldom open the boxes.  They accumulate on your doorstep and then you move them to the garage.

You have paid $108,000,000 over the years for these boxes.

Still, you seldom open them to examine the contents.  Sometimes you peek and are disappointed, but you don't get upset.  You assume that's just a bad box. After all, so many people give them five stars.

You assume all these boxes are a good value because of the reviews.  Five stars every time.  People you trust rave.  


Who are these people? 

The manufacturer?  Sure it gives itself five stars.

The manufacturer's contractors?  Sure they give themselves five stars.

The manufacturer's business partners?  Sure.

People who want to do business with the manufacturer?  Sure.  Don't burn bridges.

See what's going on here with all these stellar reviews?

__________

When we worked hard and got the ALS Registry Act passed in 2008, the primary purpose spelled out in the legislation was "better describe the incidence and prevalence of ALS in the United States."

There should be a box in our front porch labeled "Incidence."  Can't find it.  You see, the CDC ALS Registry that we got can't determine incidence from the data it gathers.

Let's look for the "Prevalence" box.  Found one.  This is what is inside -- https://www.cdc.gov/als/ALSReportsMMWR.html

We were supposed to get Prevalence reports every year.  You can see how well that is going.  They auto ship sporadically, and don't come close to being complete.  Those rave reviewers who love the CDC ALS Registry seldom use its prevalence data themselves because the data are so incomplete.  Five stars?  Really?

Here's a tidbit for you to read that is a real indictment of the quality of what we are getting (and what is being published) regarding Prevalence -- https://www.tandfonline.com/doi/full/10.1080/21678421.2017.1384021

Five stars?  Not even close.

__________

The array of boxes has grown.  The core Prevalence product is poor (and the incidence box never arrived),  so the CDC has pivoted the attention to many other gifts we receive.  Let's look at that added bonus box labeled "Research Notification for Clinical Trials and Studies."  Don't just read the great reviews.  Look inside and see what we actually got.

Today we see that notification has been issued for 11 active studies, all of which are observational only.  In fact, one is itself a "registry" and several others seem to duplicate what we thought was the original intent of the CDC Registry itself.  Egads, this gets confusing.

In real life (using clinicaltrials.gov as our source), there are 36 interventional trials actively recruiting people with ALS in the US today.  Not one of these is included in the CDC Registry notification system.  Not one.


Five stars for clinical trial notification?  Really?

But wait, there's more.

A friend's husband died from ALS in early 2019.  She has notified the CDC Registry multiple times of his passing.  He still gets notices for studies that want him.



This does not speak well for
a. The CDC Registry's basic execution.  Even my vet says that you never send a reminder card for shots for a dog who has died.
b. Any targeting that the clinical research notification may do.  This gentleman would not be a good candidate for any study at the moment.
c. The Registry's ability to mark the deceased as deceased.  We thought that there was a routine scanning of death data to make sure that the dead were excluded from the prevalence counts.
d. All of the above.

Five stars?  I don't think so.

__________

Please open up a few boxes and see for yourself if you are getting your money's worth.  Read some reports.  And stop the autopay if it simply isn't worth it.  It's not.  We're just creating foolish, expensive  clutter that is not valuable.

And don't believe every good review until you've examined some of the goods yourself.