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, 2012

It's Time To Let Clinical Trial Volunteers Know What's Really Going On (Or Not) In That Scrum


Today many ALS clinical trial volunteers wait.  They wait for trials to be completed.  They wait for data to be released.  They wait for the next phase of a trial to begin.  They wait for news.  They wait for  projects to be funded.  They wait for approvals.  They wait while the ALS clock ticks way too quickly for them and their families.

They can only make educated guesses about what is or isn't going on today.  They are outsiders when it comes to who has the ball, yet they are the most important members of the team.

Surely drug developers have extensive, detailed internal reports about who is doing what today to move their drug candidates closer to market.  How about sharing some specifics with the most important team members, your clinical trial volunteers?

Are we are waiting for an IRB meeting next Thursday? Are there still five trial seats that need to be filled in Omaha? Are statisticians working on the data the rest of the week?  Is a complicated FDA filing is due before the end of the month?  Is nothing really happening until the CEO finds another million dollars?

Knowing some specifics of what exactly is happening today would be a refreshing change for those who put their lives on the line for a clinical trial.  A peek into the scrum seems only fair.  It might even turn out to be good business.

1 comment:

  1. Thank you for sharing. I agree with you, clinical trials are a serious matter but can be seriously scary for the people who volunteer.

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