Patient orientated research and clinical trials

The time is now ripe for the ALS community in the United States to set up a national ALS Study Group. NIH and other granting agencies should fund a program to set up and run the ALS Study Group for five years renewable. This program should result in a competitive request for applications. The benefits likely to derive from a national ALS Study Group would include cheaper and more cost‐effective clinical therapeutic trials, the development of better techniques for pilot trials, an increased number of potential new drugs brought from bench to bedside for ALS trials, increased research on biological and surrogate markers of disease, and increased physician‐initiated research.