@pi065509"...but how do they determine how much the drug has...

@pi065509
"...but how do they determine how much the drug has benefited their survival and quality of life when each individual’s path and disease progression is their own and they can go through periods of stability. When a patient dies can they say the drug extended their life by X number of months?"

You can only compare it to individual others and their experience really - in our case using the Proact database which provides 8 million de-identified longitudinally collected data points from over 8,600 individuals with ALS! Yes, all individuals suffer and progress differently, but by looking at the records of more than 8,000 previous & existing patients, you can get some pretty good ideas for comparison. Undoubtedly some of the market needs further convincing - enter the Healy Trial. This is the most prestigious trial platform in the world, but again, it simply compares individuals with ALS against other individuals with ALS.