I think there’s a wide range of uses for registry data beyond the traditional clinical research component. You know, when we’re collecting information like this from patients, when we have to make sure that what we’re collecting makes sense to them, if we are using validated tools that are an instrument they understand and they understand the context of how they’re filling it out because there is often confusion...
I think there’s a wide range of uses for registry data beyond the traditional clinical research component. You know, when we’re collecting information like this from patients, when we have to make sure that what we’re collecting makes sense to them, if we are using validated tools that are an instrument they understand and they understand the context of how they’re filling it out because there is often confusion. There are lots of validated tools and sometimes they overlap. And so how do we pick the best pieces of each one to incorporate? And what is that going to look like from a usability perspective from the patient at the end of the day? Is it them filling out a tool locally that then gets entered into the registry? Or is it a case of, you know, patients will have direct access through an app or something like that, which, of course, from a patient perspective, I think is easier. But how are we actually going to maintain this and make sure that we’re getting good data coming in that can be used in multiple ways? And so beyond the clinical data, you know, clinical research perspective, really looking at is there a role for using this, for instance, in policy work or for ways that we could change health systems overarchingly to improve care. Care has come a long way. The way that regulators and others examine how well a treatment performs is more than efficacy and safety. And so this is one avenue that perhaps can contribute to that if EBMT is open to pursuing that kind of initiative. But really, it has to be something that’s co-developed with patients to make sure the right data is collected.
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