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.

Thursday, May 12, 2016

Transparent Public Discussion -- Lift The Lid

There were no public questions accepted at the ALS Association's #ALSadvocacyday conference presentation this week on the CDC's ALS Registry.  The lid was on.

The answers to questions on a publicly-funded project are important to everyone with any stake in the project.  They should be discussed openly in the spirit of sunshine and transparency.

The answer to one of the questions in my list (posted in this blog before the presentation) may affect research and those with ALS profoundly.

The research notification feature is being touted by the ALS Association (remember, a project contractor) and the CDC's ATSDR as a big success feature in the project.  It is used to help justify yet another $10 million annual taxpayer investment in the Registry project.

This research notification is an emailer that notifies people who have enrolled in the Registry of clinical research opportunities on ATSDR's list.  People with ALS (as well as legislators who allocate the funds) are told that via this tool, trials can find you.  It is sold by ALSA and ATSDR as being widely successful and so much easier than

Take a look at what studies have been included in the notification emailings --

That's a relatively short list of mostly observational studies.

On Monday night, I searched the big list at for ALS trials.
  • There were 83 open, enrolling trials for ALS listed at
  • 47 were interventional trials (you might get a drug)
  • 36 were observational trials (nformational studies but not drug trials)
  • 3 (or just 6%) of the 47 interventional trials were on the Registry notification list and
  • 3 (or just 8%) of the 36 observational trials were on the Registry notification list.

So you might be notified of 6% of the currently enrolling drug trials.

This is  2016.  Welcome back to 1990s-style emailing.  The CDC's ALS Registry has a limited emailing system for researchers.  It simply isn't patient-centric.  Blasting out emails based on crude criteria and a small subset of trials isn't "matching."

This notification tool could actually be doing great harm if the success claims are making people with ALS passive, thinking that they will automatically be notified of their clinical research opportunities.   

People with ALS need to know that they're on their own to find the right clinical research opportunities.  It shouldn't be that way, but it is.  Don't wait for an emailing on 6 percent of interventional trials needing volunteers.

See why it would have been helpful for people with all perspectives to have some open, transparent  discussion at the conference?

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