AAN 2025 | Improving neurology clinical trials: feedback from patients and caregivers

The reality in clinical research is that despite the exciting science all over the place, most of clinical trials face recruitment and retention issues. So we cannot find the patients and when we get the patients in trials they do not stay in trials till the end. And the reason why this is happening again is because we do not take into consideration the patient voice and this is why we need to improve there. So in reality what we did in that abstract we present the results of a neuroscience advisory council that we run at Parexel with patients and caregivers living with Parkinson’s with Alzheimer’s and multiple sclerosis. So we discussed three topics. The first was about clinical research awareness. So we asked and we discussed with these people, do you think that we need to do better in terms of informing the community about the principles of clinical research, but also about the ongoing clinical research in a specific indication? And patients and caregivers advised that we need more information. We need more lay language information. We had this great idea of maybe asking patients to present to other patients a clinical trial that is ongoing or the clinical research landscape in a specific indication. So patients need to have more access to information because we know that in reality a lot of people around the world, despite being connected, they are not aware of what’s happening. The second topic that we addressed was how do you define a meaningful outcome? So what is meaningful to a patient? Because as I said earlier there are some mainstream endpoints that we use in clinical research that do not necessarily reflect something real for patients in their life. And so we brainstormed about that. The advice that we’ve got is that we need to work harder there. We need to be able to measure quality of life of patients. But what was also mentioned, it was interesting, is that we need to focus more on the value of stability of disease. Sometimes, looking at the improvement of the disease, that is the ideal, we do not really value the stability of disease, the stability meaning non-progression, that in neuroscience is important. And again, this is about educating the patients and the community about the value of that. And the third topic that we covered in this board and we report in that abstract is actually about the tactics that we need to implement in clinical trials in order to make trials more attractive for patients and caregivers. We know today that people need to take time off to drive a patient, for example, to a site, or for example, they need to have access to continuous information about the progress of a trial or they need to know what will happen to them after the trial. Will they have access to an open-label, to a long-term extension, to another program. So the output there and the advice of patients is that we need to think practically how we build trials. They don’t like a lot of visits. They don’t like the visits to be really long. They want their care partners to be able to come with them and have a quiet place in the site to work maybe. They need some incentives to be part of the trial, and one of these incentives is really to have accurate and continuous information about the progress of the trial and about the future of the asset that is being studied.

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