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.

Thursday, December 13, 2018

I Heard Three Words I Thought Would Never Be Uttered By A Neuroscientist!

I heard them with my own ears.

"We were wrong."

In a field where there is a lot of braggadocio from people who have only managed to deliver two meh treatments for ALS over many decades, I never thought I would hear this admission.

It happened at Ask The "Experts" session (there is a whole other blog post on that title) prior to the big ALS MND Symposium in Glasgow last week.  It was a refreshing dose of humility from a leader in a field where there is little of that virtue despite the terrible toll that this uncontained disease takes.

Dr. Orla Hardiman from Trinity College in Dublin was speaking about clinical trial designs.  She said, "We were wrong," as she described past trial designs and changes we must make in order to move forward.

That was a huge statement of fact.  That admission from one neuroscientist seemed to carry forward to others during the Symposium (yet hardly stated so clearly).

We look forward to some major clinical trial design changes immediately.

How about some very targeted inclusion criteria complemented with EAPs that include those who don't qualify for the trials but can still provide informative data? 

Thanks, Dr. Hardiman.


p.s. Thanks to MND Scotland for providing all of the slides from the presenters.
https://www.mndscotland.org.uk/research/ask-the-experts-2018/  

And next year, I hope they change the name to "Ask the Neuroscientists" and stay until every patient or caregiver question is answered.

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