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, March 6, 2014

Don't Let The Matchmakers Lull You To Sleep

It doesn't pay for people with ALS to wait patiently for a clinical trial to find you as a perfect match.

The proliferation of clinical trial matching services, whether via www.patientslikeme.com or https://www.inspire.com/groups/als-advocacy/ or http://www.cdc.gov/als offer promise to notify patients of clinical trial opportunities.

Do those give people with ALS a "don't call us, we'll call you" impression about clinical research?

Do people with ALS miss their short trial eligibility window waiting for the phone to ring?

Those matching services simply don't cover the gamut of enrolling clinical trials.  And they know nothing of patient preferences of location or the type of trial that would work for the individual. They are designed around selected clinical trial sponsor enrollment needs rather than patient needs.

They might find you as a perfect match in a timely manner.  They very well might not. 

www.clinicaltrials.gov shows 71 open ALS trials as of this morning. 

http://wwwn.cdc.gov/als/ALSResearchNotificationClinicalTrialsStudies.aspx has added a nice recap of its research matching notification.  You can see that it's a list of far fewer than 71.

Relatives often want to help when someone is diagnosed with ALS.  The search for a clinical trial can be a great project for them.  They know that you could stay with Aunt Mary in Phoenix or that you would never want to work with that doctor in Buffalo. They can work with you to sift through the variables.  They can help pose the questions that you must ask to figure out if a trial's science is new or old, more promising or less promising.

Some good tools for active ALS clinical trial searches are
www.clinicaltrials.gov (It's not pretty, but it's the most complete.)
http://www.alsconsortium.org/browse.php (They have a live person who can help.)
http://www.als.net/ALS-Research/ALS-Clinical-Trials/ (Very readable to compare trials.)

Finding a clinical trial is a job, but nothing is ever easy with ALS.  The only treatments the least bit promising for people with ALS are these experimental trials.  To miss those opportunities by being passive is tragic for both the patients and the science.

Until the matchmakers become more complete and smarter at being focused on a patient's needs and preferences, you're on your own to find the right match for you.

You snooze, you lose.


1 comment:

  1. Another great resource for clinical trial information for the US, as well as international, can be found at http://www.als.net/ALS-Research/ALS-Clinical-Trials/

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