• This topic has 4 replies, 4 voices, and was last updated 2 years ago by Bill.
Viewing 4 reply threads
  • Author
    Posts
    • #16402
      Amanda
      Keymaster

      I’m interested in learning about the clinical trials that our community members have applied for or taken part of since being diagnosed.  How did you get involved and what was the criteria for participation. What suggestions do you have for other pALS seeking treatment and/or clinical trials?

    • #16403
      Amanda
      Keymaster

      You are encouraged to list websites or contact information for resources:

      https://www.als.net/als-research/als-clinical-trials/

    • #16404
      Dagmar Munn
      Keymaster

      I AM ALS has a great site with up-to-date information:

      https://iamals.org/alssignal/

    • #16410
      Marianne Opilla
      Participant

      I am in week 3 enrolled in the inhaled Cromolyn trial.  Cromolyn is a med from the 1970’s that was used for Asthma. It has been shown to reduce inflammation in motor neurons.  It is a Phase IIa trial randomized to 2 doses. My neurologist offered me this trial because it is short (12 weeks), proven well tolerated, and no placebo.

      Once that is completed, I will decide about enrolling in the platform trial.

      I feel that if there is something tooter that can possibly slow progression, I will try it.

    • #16418
      Bill
      Participant

      I’ve been in 2 clinic drug trials and 2 research genetic and longitudinal studies.

      Fortitude ALS phase 2 by Cytokenetics . Drug Reldesemtiv. I got in this a couple months after diagnosis in 2018. It ran 12 weeks. I was diagnosed at USF Morsani where that was a study site. They told me of it. They did comprehensive exams. SVC,  muscle strength tests and speech testing.
      2nd drug test REFALS also at USF Morsani ran about 18 months. I just slipped into it with my time of symptoms being issue. It was test of Levosimendan. Tests were primarily SVC, EKG and ALSFRS tracking. Trial washed out failing to meet study goals. This one I found by my USF contacts.
      I found two studies at UofMiami. These I believe by searching Clinicaltrials.gov. One was study is the CReATe ALS genetic and longitudinal study. Objective was biomarker research. My genome was run and I did SVC, blood tests, urine tests and physical exams. Later my dads dna from brain sample), sister and mother’s   Dna were added to try to find source of my family’s diverse MND’s. Although my data remains in the CReATe database I am no longer actively followed. I was negative for known mutations.
      The second study which ran concurrently at Uof Miami was preFALS which was to id families with familial FTD/ALS. Since they could not find my mutation that ended for me.

      I still keep in contact with  both research facilities to look for added trials but with my almost 5 year since symptom onset I’m pretty much locked out. I did turn down a phase 1 first human trial study which was a pure safety study.

      Bill

       

       

       

       

       

Viewing 4 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account