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.

Friday, August 10, 2012

Are We There Yet? Are We There Yet?

As we saw last year as people with ALS swarmed over social media and support group meetings to recruit peers in a promising Neuraltus clinical trial, a day saved recruiting patients is as valuable as a day waiting for data analysis or an approval later.

It would be interesting if subjects (and others) had three simple time lines for every clinical trial --
  1. An optimistic version if every step were to go swimmingly well
  2. An expected version
  3. A pessimistic version featuring some worst-case timing
Sometimes we have visions of data sitting somewhere waiting for a meeting to happen on a certain date.  Sometimes we have visions of stacks of papers growing yellow with age at the FDA.

If we had a much clearer picture of what can be expected and who does what and what patients can affect themselves, would it not make for a better process for everyone?

No comments:

Post a Comment