We hosted a webinar on April 8th to discuss the current state of plans for the HEALEY ALS clinical trial, featuring panelist Reagan Healey, who has a message for us and for ALS patients and caregivers everywhere:
"I am really glad we could update you today and let you know of our neverending commitment you and your families.
I am in New York and every night this month at 7 pm the city erupts with cheering, drum pounding and clapping to thank our Healthcare professionals and all frontline workers during this Corona Crisis. It can be heard as a low rumble if you’re inside and then a thunderous chorus when you open a window.
But I am going to let you in on a secret: I scream and cheer for you all and for my brother Sean. And I want you to know that Sean and the Healey Center are and will continue to be the strongest voices on your behalf. We will put an end to the ALS crisis." – Regan Healey
March Progress Report: Successful Investigator Meeting and IRB Approval
The Sean M. Healey & AMG Center for ALS at Mass General held the HEALEY ALS Platform Trial Investigator Meeting on March 12-13, 2020. Just prior to the investigator meeting, the HEALEY ALS Platform Trial received central IRB approval for the Master Protocol and all three of the first trial regimens. Approximately 250 attendees participated in the meeting, including trial organizers, staff from the 54 participating sites, representatives from the HEALEY ALS Platform Trial patient advisory committee, our three industry partners, and from TackleALS, The ALS Association, the Muscular Dystrophy Association and ALS One. Due to the COVID-19 outbreak the meeting was held remotely via videoconference, a change that met with remarkably positive feedback.
Site investigators and coordinators actively participated in our remote training meeting and are excited to begin enrollment in the trial. All of us are following the news of COVID-19 and responding to COVID-19 developments within healthcare. And at the same time, study teams continue to work intently toward site activation for this trial. This is an exceptional testament of the commitment and resourcefulness of our entire ALS community.
The successful Investigator Meeting and initial approval from the central IRB are both key milestones bringing us closer to launching the HEALEY ALS Platform Trial. Our goal remains the same as it has been since we first envisioned the trial: to have all sites ready for activation as soon as possible, so that when we can safely enroll participants, our progress will be rapid and efficient.
For more information, please feel free to contact us at HealeyCenterforALS@mgh.harvard.edu.