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    • #16400
      Robert Foxwell
      Participant

      Has anyone been or plan on being screened for the Healey ALS Platform Trial?

      I submitted my name with my ALS Clinic in Detroit, in the hope of being a favorable candidate for the trial.

      I found this trial at the I AM ALS website, where they have a nice tool for searching out clinical trials. Through this same website I found the group Unite Genomics, who are working to help accelerate research and development of treatments for certain rare diseases. Unite Genomics is hosting a webinar about clinical trials, and what the experience may be like. The webinar in September 25th, from 1 to 2 p.m. (PDT), a link to this event is below. The speaker will be Phil Green, who is a patient advocate, an I AM ALS clinical trials committee member, and on the Healey ALS Platform Trial patient advisory committee.

      https://www.unitegenomics.com/events/participating-in-a-clinical-trial?utm_medium=email&utm_source=getresponse&utm_content=Free+ALS+Virtual+Webinar+%26+Discussion%3A+Participating+in+a+Clinical+Trial&utm_campaign=Chief+of+Staff+%26+EA+to+CEO

      I have registered and hope to learn a little more about clinical trials.

    • #16411
      Marianne Opilla
      Participant

      Hello Robert,

      I plan to enroll in platform soon. My team will start recruiting soon.  Have to try what is offered!

      Marianne

    • #16413
      Jonathan L Maddock
      Participant

      You should ask your neurologist if they can assist in your entry into a prescreening. The platform trial is “popular”, and entry, especially at the start-up, might be problematic.

      I have done the above, and hope to be accepted into a prescreening, but there is no guarantee.

      As more sites open-up, hopefully there will be less admittance pressure.

       

      Jon

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