What research we no longer need in neurodegenerative disease at the end of life : The case of research in dementia

Abstract

A complete silence. That was what we got back from the European experts who had been energetically discussing research priorities in palliative care in neurodegenerative disease (ND) until a short while ago.1 The chair, an entertaining professor with good manners, must have felt the unease and quickly refocused the group to their task. But, wasn’t this the best question of all day? What research we no longer need? As scientists able to consider different perspectives, shouldn’t we have some idea of what research is, by contrast, no longer necessary? Palliative care research and research with people who have ND and are at the end of their life is, by definition, difficult. Making choices is a sensitive issue, but funds are limited. Therefore, we take a counterpoint to the research agenda recently reported by European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND),1 and consider whether there are studies we no longer need or are low priority, taking the example of dementia