Clinical Trials

[JohnnyMags]

People have told me to look into Clinical Trials. I'm totally lost in that department. I asked my wife's ALS doctor via text about CT's but he just ghosts me on that one. I went to Clinicaltrials.gov but I don't understand what they are showing me. Nor do I know how to apply if there was something worth while. What do these trials offer in the way of hope? Is this even something worth looking into?

 

[lgelb]

First, you can search on ALS trials, and many people specify "interventional" trials.

Every trial lists a key contact for every site, and how to contact them. If you see a site that you guys can travel to, and you are interested in the trial, you contact the person listed.

For example, since you live near Philly, and have already been to Penn, might be worth reaching out for this one -- the machine mentioned is already in use, but the followup and use of a standardized protocol might be useful.

ClinicalTrials.gov

clinicaltrials.gov

 

[Honey2468]

The ALS TDI website trial navigator is a good resource to help you find a clinical trial. I used this to help find one my mom could be a part of. She ended up in participating in the HEALEY trial and is how in the open label portion.
I found when contacting research sites it was importantly to be persistent and call/email several times