Lambert-Eaton News Forums Forums General Questions and Topics Would you participate in a clinical trial?

  • Would you participate in a clinical trial?

    Posted by Price Wooldridge on May 10, 2023 at 7:00 am

    There is a drug in pre-clinical study for LEMS that may, at some point, do a full clinical trail for FDA approval. The drug is efgartigimod.

    Given that LEMS patients will be asked to participate in these trials, have you considered whether you might opt in?

    Recently I attended a webinar on this very subject, and it can be complex. Here are some talking points about clinical trial participation:

    How long with the trial last?

    Do I have to pay?

    Is there reimbursement for trial expenses?

    Will I be able to see my own doctor?

    These are just a few of the many considerations which need to be answered on a personal level before getting into a trial.

    Let us know what your thoughts are about doing a clinical trial for a potential, new LEMS medication.

    Price Wooldridge replied 1 year, 1 month ago 4 Members · 7 Replies
  • 7 Replies
  • Amber

    Member
    May 12, 2023 at 2:55 pm

    Where can I get info on this trial? Yes I would do it in a heartbeat.

    • Price Wooldridge

      Member
      May 12, 2023 at 5:47 pm

      There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.

    • Price Wooldridge

      Member
      May 12, 2023 at 5:47 pm

      There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.

  • Tracey Van Hoof

    Member
    May 12, 2023 at 5:44 pm

    Is this in addition to Firdapse or replacing it?

    Tracey

    • Price Wooldridge

      Member
      May 12, 2023 at 5:49 pm

      This is currently not known because the trial has not started. I believe this will be a consideration in the design of the trial. Right now a trial is not expected until next year.

  • Jessica Jones

    Member
    May 19, 2023 at 4:33 pm

    I know someone diagnosed with MG who uses Vyvgart and it works very well for him, but MG and LEMS are different fundamentally, so I’d be interested to know the biochemistry behind how they expect Vyvgart to work for LEMS and MG both effectively.  I have finally achieved balance with my current treatment and am stable, so it would be difficult for me to risk that balance by joining a clinical trial, but I would like more information before making a decision.

    • Price Wooldridge

      Member
      May 19, 2023 at 4:40 pm

      Jessica, I’ve heard the same from several LEMS patients. When you’re already on an effective treatment plan, stepping into the unknowns of a clinical trial could make that decision much more nuanced.

      Vyvgardt works for MG and word I have is they expect the formulation of efgartigimod, based on the same mechanism of action, will hopefully work with LEMS too. Vyvgardt is delivered as a series of infusions while the drug for LEMS is to be delivered by a sub-q injection. The basic concept of working directly on antibodies is similar, based on my understanding at this point.

Log in to reply.