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, January 18, 2017

Welcome to the 21st Century, Clinical-Trial Matching

If you've ever shopped for a clinical trial for ALS, you know that the shopping tools have been stuck in the 1980s.  Clunky.  Incomplete.  Passive.  Redundant in their flaws.

If you've ever shopped for a pair of shoes online, you know how shopping tools should work in the 21st Century.  Inviting.  Effective.  Sensitive to my preferences. Active.

We often hear about how it costs a billion dollars to develop a new drug.  Time is money.  Time is life for people with ALS.  Yet we continue to use archaic search tools or email notifications for clinical research projects.  People with ALS have been issued 1980s tools that are inefficient and ineffective for all stakeholders.

A few years ago I crossed paths with some folks whose work has developed into antidote.me . Take a look.  They have a business model that addresses a lot of problems that people face in shopping for the right clinical research opportunity.

Over the years we have talked.  I have complained.  They have listened.  I have suggested.  They have listened.  They have taken an interest in ALS.  I maintain that ALS can be a stress-test for a lot of areas of healthcare that need improvement.  They get that.

Yesterday on the right panel of this blog below the tweets, I inserted a snippet of code that gives everyone a portal into their newest edition of their clinical trial search tool.  I hope that it is helpful.  Give it a try. You might find something interesting.  Use their contact form to let them know what you think.  Perfect?  No.  A step into the 21st Century?  Absolutely.

So today we see that it is completely possible to have online search tools that are kept continuously up-to-date with the newest clinicaltrials.gov data.  That has been a big flaw in many old search tools.  We see a tool that includes all recruiting trials (and not just those from selected sponsors).  We see a tool that unsnarls the clinicaltrials.gov data into something readable and usable.  We see a tool that gives you some control of filters.  We see a tool that is easily sharable.

Yes, I still have suggestions -- more control over filters, yelp-like reviews, information like the number of seats left at a trial site.  I have every confidence that we can get there.  Today we see the giant leap we needed to welcome clinical-trial matching into 21st Century.  Thanks, antidote.me.



Note:  I neither seek nor receive any compensation for my work to improve the fight against ALS.

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