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Hof researchers realize nationwide headache register

The headache registry of the German Migraine and Headache Society (DMKG) was launched in June 2020 after a two-year preparatory phase. Almost 1000 patients have registered in the meantime. It was implemented by a consortium of two research groups from the Institute for Information Systems at Hof University of Applied Sciences and smartlytic GmbH, a spin-off of Hof University of Applied Sciences.

Headaches are a widespread disease: Every second German suffers from them regularly or sporadically.Thenumber of sufferers is rising, especially among children and young adults
Image: ©istockphoto.com/AntonioGuillem

Improving care

The goal of the medical project, which is unique in Germany and is headed by PD Dr. Ruth Ruscheweyh from the Neurological Clinic at LMU Munich – a member of the DMKG presidium – is to improve clinical care for headache patients. Participating physicians will be supported by the registry in their treatment. The data collected in the registry will identify gaps in care.

Technical development in Hof

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

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

“We are very pleased that we were able to implement this important project here in Hof. We have been involved in headache research for almost 10 years 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.”

Web portal connects doctors with patients

At the heart of the registry is an Internet portal that connects physicians and patients. Participating practices and centers invite their patients to use this portal. It systematically collects the information needed to treat headache patients. The associated DMKG app acts as a personal headache calendar. The treating physicians can view this data and adjust the therapy accordingly. At the same time, an anonymized, Germany-wide database is created that is used for scientific evaluations.

PD Dr. Ruth Ruscheweyh sees a great opportunity in this project

“It is clear that the treatment of headaches can and must be improved. So far, there is far too little data on the quality of care for headache patients in Germany.”

The Internet portal www.kopfschmerzregister.de collects the data needed for the treatment of headache patients

PD Dr. Tim Jürgens, president of the DMKG, emphasizes

The technical platform of the registry enables us as a scientific professional society for the first time to conduct independent practice-oriented health care research.

Since the start of the pilot phase in June 2020 with selected physicians and headache centers, almost 1000 sufferers have already registered. At the German Pain Congress in October 2020, the project leader PD Dr. Ruth Ruscheweyh presented the registry to a larger professional audience – since then, the number of users and participating physicians has been increasing daily.

Webtalk on the topic of headaches

If you would like to know more about the project, we recommend the Webtalk at Hof University of Applied Sciences: There, Prof. Dr. Jörg Scheidt, iisys research group leader in the field of “Analytical Information Systems” was asked what the registry is all about, why the “hangover” is not a research subject, and what time savings the project will generate for patients and medical professionals

To the webtalk of the Hof University of Applied Sciences

Webtalk: Anne Habbel (Research Marketing) in conversation with Prof. Dr. Jörg Scheidt; Image: Hof University of Applied Sciences
Anne-Christine Habbel
Kirsten Hölzel

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