麻豆社

Experiment

Anton Potteg氓rd

Digital Participatory Pharmacoepidemiology in Neuroscience: The Endometriosis Brain pilot study

Professor
University of Southern Denmark

While neuroscience increasingly uncovers how chronic somatic diseases affect mental health, research consistently overlooks how patients navigate these challenges in their daily lives. This gap is particularly pronounced in endometriosis, which affects 10% of women and causes neuropsychiatric symptoms, also called "endometriosis brain". 

However, how women with endometriosis actually manage their mental health remains unstudied, leaving them to find their own coping strategies. Innovative approaches that address women concerns and capture real-world treatment experiences are required.This project will develop and employ an innovative, large-scale, patient-guided approach where women themselves shape the research from start to finish. Specifically, we will put our research expertise and 30 years of Danish health data at the service of hundreds of women with endometriosis, recruited through online platforms. 

We will use AI-enhanced methods to handle the expected large volume of patient experiences and comprehensively examine real-world psychotropic medication trajectories to better understand how endometriosis relates to neurological and mental suffering. The perspectives of women will shape the protocol development, analysis, interpretation, and communication throughout every stage.This patient-centered approach would constitute a global first-of-its-scale for a condition that necessitates enhanced engagement. 

The findings from this study will address neuroscience knowledge gaps for women with endometriosis, enabling us to propose strategies that improve care and mental wellbeing for women affected by this debilitating condition. Lastly, beyond the example of endometriosis, this project aims to create a digital partnership framework for chronic disease patients to better understand real-world mental health management, enabling the extension of this method to other underexplored conditions.

Recipient of the Lundbeck Foundation Young Investigator Prize 2025