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.

Monday, February 13, 2012

It's Amazing What You Can Learn When You Ask, "What Should I Ask?"

One of the first things that can benefit an ALS patient after diagnosis is searching for a clinical trial that may give a chance at a beneficial new treatment and will certainly give a feeling of purpose in the battle against a disease without a good treatment.

There is a website that gives patients a lot of excellent information in evaluating clinical trial choices -- www.alsconsortium.org . The website doesn't have a catchy URL and the organization that maintains it doesn't have a name that really matches the mission clearly, but it is the go-to place for ALS clinical trial information. There is a physician who is an ALS clinical trial expert who is available for telephone or email consultations at no charge to patients. If only the well-meaning relatives who search the internet for hope for their loved ones would find this site rather than the Chinese miracle cure sites!

There are clearly choices in clinical trials, and one might wonder what a neurologist or ALS researcher would choose personally if faced with ALS. Some trials are more "promising" than others and some drug candidates have been around the block before without a lot of success. How does a patient sift through the trials to find the best personal choice.

It would be really helpful of neurologists and ALS researchers would contribute to a list of things that they would ask before choosing a clinical trial. Surely there are things like whether one trial excludes you from others, whether there is a placebo group, whether there is financial assistance for travel, whether the drug candidate has been tried for ALS before, whether there are likely side effects, whether the trial can move forward quickly, etc.

Is there anyone in our ALS organizations who might interview some experts to assemble the really good questions that they would ask? We're talking about the insightful questions that they would ask if they or their loved ones were in the ALS dilemma. This list of questions would be a valuable resource for patients (and for well-meaning relatives).

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