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Germany-wide DMKG headache registry has recorded 1000 patients

The headache register of the German Migraine and Headache Society (DMKG), co-developed at Hof University of Applied Sciences, has recorded its 1000th patient. The aim of the Germany-wide project headed by PD Dr. Ruth Ruscheweyh from Ludwig Maximilian University in Munich is to identify gaps in medical care for headaches and thus improve treatment in the long term. At the same time, sufferers will be provided with a system for digitally documenting their headaches.


Headache disorders such as migraine affect 10-15% of the German population and often lead to a significant reduction in everyday performance and quality of life. Although there are good treatment options, these do not benefit all patients equally. Headache prophylactic measures in particular are used far too little. When patients are offered only painkillers as therapy for frequent headaches, many enter a vicious cycle with chronicity of their headaches due to overuse of painkillers. The DMKG has set itself the task of identifying and closing such gaps in care.

Comprehensive documentation

The headache registry supports headache sufferers in recording their headaches and offers the possibility to share this documentation with the treating physician. For this purpose, there is on the one hand the DMKG app, which queries the occurrence of headaches daily and summarizes them in a digital headache calendar. The second component is the patient portal, where the most important information about the headache is recorded in digital form, e.g. headache frequency and severity, medication, previous diagnostics and previous illnesses. This information can be entered before the first doctor’s appointment and then made available to the attending physician. This means that the patient comes to the doctor with complete documentation and there is more time for the personal consultation and the individual determination of the treatment. The doctor then adds some information to the register, e.g. the headache diagnosis. In this way, a database is built up at the same time, which is used in anonymized form for scientific evaluations. For example, it is possible to find out which headache medication is most effective and tolerable from the patient’s point of view, and how this affects headache frequency on the one hand, and quality of life on the other.

Technical development at Hof University

The technical development of the headache registry took place in Hof. A consortium from around Hof University of Applied Sciences was awarded the contract in 2018. Responsible for the conception and technical realization of the registry were smartlytic GmbH – a spin-off of former students of Hof University of Applied Sciences from the digital start-up center Einstein1 – and the research group “Analytical Information Systems” headed by Prof. Dr. Jörg Scheidt.

Prof. Dr. Beatrix Weber and Prof. Dr. Jörg Scheidt are involved in the development of the headache register on the part of Hof University of Applied Sciences; Image: Hof University of Applied Sciences;

The research group “Law in Sustainability, Compliance and IT” under the direction of Prof. Dr. Beatrix Weber worked on all questions concerning the legal aspects, the certification as a medical device and the protection of the stored personal data

We are very pleased that we were able to help implement this important project here in Hof. We have been involved in headache research for over a decade with the Migraine Radar project and were able to contribute the experience gained there to the registry.”

Prof. Dr. Jörg Scheidt

Dr. Dirk Reinel, one of the three founders and managing director of smartlytic GmbH, particularly emphasizes the very good cooperation: “The fact that we were able to successfully implement this large-scale interdisciplinary project together was primarily due to the excellent and uncomplicated cooperation with the participating institutions.”

1000 patients integrated – database enlarged

The project was initially launched in June 2020 at a few specialized centers and has been expanded over the course of the last few months to a current total of 18 centers. Now the 1000th patient has been included. The feedback from patients and practitioners has been very positive. The system is easy to use, functions reliably from a technical point of view, makes headache documentation available to patients and physicians in a clear form both online and for downloading, and avoids cumbersome paperwork. With 1000 patients, a database is now available from which the first questions of health care research can already be answered. Initial results have already been shown at this year’s German Pain Congress, which took place in Mannheim from October 20-23.

Who can participate?

Who can participate as a headache sufferer? – The free and ad-free DMKG app can be used by any headache sufferer. The patient portal is available to patients who are being treated by a physician participating in the headache registry.

Who can participate as a physician?

Any physician member of the DMKG who has earned the DMKG’s Head and Facial Pain Certificate can register their practice or center for participation. For more information: www.kopfschmerzregister.de, www.dmkg.de

PD Dr. Charly Gaul
Rainer Krauß

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