Sleep Europe 2026 | Ongoing work by the European Narcolepsy Network: hypocretin levels and sex differences in narcolepsy

So the European Narcolepsy Network, it’s actually a really nice network that we’ve built in the last 15 years within Europe where we have multiple centers that actually collaborate together on harmonized acquisition of data on these rare disorders of narcolepsy and idiopathic hypersomnia. And we built this network from one perspective of a research perspective to see if we can perform studies to actually learn more about these disorders. But it also has a big educational component because we really try to educate different institutions within Europe to learn more about how they should diagnose narcolepsy and idiopathic hypersomnia and how they can treat it better as well. And for the research that we do with the network, we use a large database. And this database, it comprises more than 3,000 patients from over 20 sleep centers across Europe. And we have harmonized data collection. So this is really unique in the whole world. And what we did for the studies that I presented here are actually two different studies. The first one, we looked into the influence of hypocretin levels on the symptom heterogeneity of people with narcolepsy. Because we can have a whole different range of phenotypes with how these patients actually present themselves. And we don’t really understand why some patients have some symptoms or a different frequency in the symptoms than others. And what we tried to investigate was whether the hypocretin level actually influences this. And we found really interesting correlations that this is the case. So the information in the hypocretin level, we think it goes far beyond the deficiency level. If it’s deficient or if it’s normal, but it is interesting to also look into the ranges of the deficiency, if it’s undetectable low or maybe intermediate, because we think it can explain a lot. So that’s the first study that I highlighted, and then the second study, it was about sex differences in narcolepsy type 1, and there we know from previous animal work in mice models of narcolepsy type 1 that female mice tended to have more severe cataplexy compared to their male counterparts, and we wanted to see if in our large database if that actually also was the case in humans. And what we did is we compared different age groups of boys, women, middle-aged, and also elderly, of the women compared to the males, and we actually found very interesting, quite similar results, so we saw that the young women with narcolepsy, that they had more complete cataplexy attacks compared to their male counterparts, so I think that’s a really nice bridge from animal work actually to human work, and we also found some variables that we were expecting, so the women also had a longer sleep duration across the different age ranges, and the men, they had a higher BMI and a higher AHI, but that was something we know from the general public as well.

This transcript is AI-generated. While we strive for accuracy, please verify this copy with the video.