In Denmark, nearly one in five adults (17.9%) lives with migraine or frequent headaches. These conditions can be a severe burden for the individual, causing pain and related symptoms that often affect family life, work or studies, and daily routines.

Severe headaches can feel like an invisible illness, as others may not fully understand the intensity of the pain or the challenges of living with such a condition.

Most people with headaches manage their symptoms individually or with the assistance of their general practitioner. Only a small fraction is in contact with the broader healthcare system in Denmark. As a result, despite the high prevalence, there is a lack of data about migraine and frequent headaches in Denmark.

Therefore, there is still much to learn about life with migraine or frequent headaches. Collecting more data about the lived experiences of these conditions can enhance our understanding of the conditions and their consequences. This, in turn, can aid in improving treatment options in our healthcare system for citizens living with these diseases.

Consequently, the Danish Knowledge Center on Headache Disorders and Lundbeck have initiated a public-private research project titled “HEAD-WINd” (MOD-VIND in Danish) about migraines and headaches, which involves 100,000 adult Danes.

The objective of the project is to carry out a public-private study that develops innovative methods for collecting data about the everyday lives of Danes living with headaches and migraines. The aim is to generate new evidence that eventually will contribute to the development of improved treatment strategies in the Danish healthcare system for citizens suffering from migraines and frequent headaches.

The research project is a collaboration between the Danish Knowledge Center on Headache Disorders, led by Professor Messoud Ashina, and Lundbeck, led by Agathe Le Lay, Head of Global Value Evidence and Patient Insights

A key aspect of the research project is an innovative methodology for gathering data about the daily experiences of individuals living with frequent headaches and migraines, as well as integrating this ‘real-world data’ with existing registry data in Denmark. Not only will this benefit the scientific research – it will also lay a solid foundation for innovation: It will increase our understanding of headaches and migraines, contribute to the development of evidence-based improvements for future treatments within the healthcare system, and shed light on new methods for generating evidence in the future.

The data is sourced from public registries at Statistic Denmark and the Danish Health Data Agency which will include 100,000 randomly selected citizens, all of whom have been invited to participate in a survey about their symptoms of migraines and headaches.

Upon completing the survey, all participants are invited to use a tailored app for three months. This app is custom-built to gather relevant data about headaches and migraines in a day-to-day context.

Lundbeck and the Danish Knowledge Center on Headache Disorders have collaborated with the patient associations ‘Denmark’s Patient Association for Headache Sufferers’, ‘Migraine Denmark’, and the ‘Migraine and Headache Association’, to develop informational content and videos for the app. The aim is to encourage participants to use the app throughout the three-month duration of the research project, thereby ensuring more comprehensive data collection and enhancing the quality of the results.

This initiative was started as part of Lundbeck Executive Management’s commitment to foster digital innovation across the company by investing in selected “Digital Lighthouses”. Digital Lighthouses are key innovative projects focused on supporting patients suffering from neurological or psychological illnesses through new and future-minded digital capabilities. Lighthouse projects will transform how Lundbeck engages externally and utilizes the best tools available to provide disease understanding and care in a digitalizing world.  

The research project is expected to yield updated evidence about the number of Danes living with migraines and other headache disorders.  Furthermore, it has the potential of shedding light on the societal and personal costs associated with frequent headaches and migraines. Thus, the knowledge gathered will enhance our understanding of life with headaches, both in society as well as in the Danish healthcare system. Ultimately, this could contribute to the improvement of treatment strategies in Denmark over the long term.