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- Ruth Ruscheweyh, Theresa Klonowski, Gudrun Goßrau, Torsten Kraya, Charly Gaul, Andreas Straube, Tim Patrick Jürgens, Jörg Scheidt, and Stefanie Förderreuther.
- Department of Neurology, Ludwig Maximilians University Munich, Munich, Germany. ruth.ruscheweyh@med.uni-muenchen.de.
- J Headache Pain. 2022 Jul 1; 23 (1): 74.
BackgroundAlthough good treatment options exist for many headache disorders, not all patients benefit and disability continues to be large. To design strategies for improving headache care, real-world data observing standard care is necessary. Therefore, the German Migraine and Headache Society (DMKG) has established the DMKG Headache Registry. Here we present methods and baseline data.MethodsAccredited German headache centers (clinic-based or private practice) can offer participation to their patients. Patients provide headache history, current headache load (including a mobile headache diary), medication and comorbidities and answer validated questionnaires, prior to their physician appointment. Physicians use these data as the base of their history taking, and add, change or confirm some central information. Before the next visit, patients are asked to update their data. Patients will continuously be included over the next years.ResultsThe present analysis is based on the first 1,351 patients (1110 females, 39.6 ± 12.9 years) with a completed first visit. Most participants had a migraine diagnosis. Participants had 14.4 ± 8.5 headache days and 7.7 ± 6.1 acute medication days per month and 63.9% had a migraine disability assessment (MIDAS) grade 4 (severe disability). 93.6% used at least one acute headache medication, most frequently a triptan (60.0%) or non-opioid analgesic (58.3%). 45.0% used at least one headache preventive medication, most frequently an antidepressant (11.4%, mostly amitriptyline 8.4%) or a CGRP(receptor) antibody (9.8%). Most common causes for discontinuation of preventive medication were lack of effect (54.2%) and side effects (43.3%).ConclusionThe DMKG Headache Registry allows to continuously monitor headache care at German headache centers in both a cross-sectional and a longitudinal approach.Trial RegistrationThe DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081 ).© 2022. The Author(s).
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