Cudkowicz is interested in clinical trial design. She lists that on the Massachusetts General Hospital website.
My translation:
Since we don't have any reliable objective measure of ALS progression except death, let's keep using the shotgun approach and "measure" everything we can think of.
"Because ALS is ultimately a fatal disease, survival is an obvious choice as a marker of disease progression, as well as success or failure of experimental trials. However, as a clinical trial outcome measure, survival has a number of limitations."
Just not being dead does not mean the drug worked.