Monday, March 01, 2021 12:05:08 PM
Short version the main discussion was about how industry can and should work with the patient advocacy groups during the planning phase of their trials so that they can adapt the trials and endpoints to factor in needs of the community.
Nadia discussed how too many people in the bio industry design their trials and then after the fact try to account for challenges in the community. She was very positive in pointing out the Missling was not part of that group and actually worked with those groups prior to trials.
One example CM mentioned was that during the Rett planning the discussions provided insight on how tough the mobility can be for that community so they designed the trial to allow for more in home visits, blood draws for example, that would limit the travel needs. This proved to be very beneficial during Covid.
Nadia - Advocacy groups and community ecosystem groups can provide different insights and recommended to interact with both during the planning phases.
CM - We have found that making the patient the focus instead of the compound the focus allows us to design better trials for all.
Typed this as it went on so didn't stop to spell check.
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