In my dream world, there would be a consistent message given by the neurologist to every patient and family on the first clinic visit --
- Go to www.cdc.gov/ALS and self-register in the ALS National Registry. That is the only way to insure that your case will be counted and that your clues will be retained for scientific research. We will help you.
- Find a physician doing clinical trials and participate in a clinical trial. The only thing the least bit "promising" would be experimental. We will help you.
Then this should be discussed on the second visit and the third until the patient and family have made an informed decision on each of these critical actions.