The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients

Abstract Background Although 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 So...

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Main Authors: Ruth Ruscheweyh, Theresa Klonowki, Gudrun Goßrau, Torsten Kraya, Charly Gaul, Andreas Straube, Tim Patrick Jürgens, Jörg Scheidt, Stefanie Förderreuther
Format: Article
Language:English
Published: BMC 2022-07-01
Series:The Journal of Headache and Pain
Subjects:
Online Access:https://doi.org/10.1186/s10194-022-01447-3
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author Ruth Ruscheweyh
Theresa Klonowki
Gudrun Goßrau
Torsten Kraya
Charly Gaul
Andreas Straube
Tim Patrick Jürgens
Jörg Scheidt
Stefanie Förderreuther
author_facet Ruth Ruscheweyh
Theresa Klonowki
Gudrun Goßrau
Torsten Kraya
Charly Gaul
Andreas Straube
Tim Patrick Jürgens
Jörg Scheidt
Stefanie Förderreuther
author_sort Ruth Ruscheweyh
collection DOAJ
description Abstract Background Although 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. Methods Accredited 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. Results The 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%). Conclusion The DMKG Headache Registry allows to continuously monitor headache care at German headache centers in both a cross-sectional and a longitudinal approach. Trial registration The DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081 ).
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spelling doaj.art-10586de78c9442209cc4da8d5a32d3872022-12-22T01:20:48ZengBMCThe Journal of Headache and Pain1129-23691129-23772022-07-0123111110.1186/s10194-022-01447-3The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patientsRuth Ruscheweyh0Theresa Klonowki1Gudrun Goßrau2Torsten Kraya3Charly Gaul4Andreas Straube5Tim Patrick Jürgens6Jörg Scheidt7Stefanie Förderreuther8Department of Neurology, Ludwig Maximilians University MunichDepartment of Neurology, Ludwig Maximilians University MunichHeadache Outpatient Clinic, Pain Center, University Hospital and Faculty of Medicine Carl Gustav Carus, TU DresdenDepartment of Neurology, Hospital Sankt Georg Leipzig gGmbHHeadache Center FrankfurtDepartment of Neurology, Ludwig Maximilians University MunichDepartment of Neurology, Headache Center North-East, University Medical Center RostockInstitute for Information Systems, University of Applied Sciences HofDepartment of Neurology, Ludwig Maximilians University MunichAbstract Background Although 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. Methods Accredited 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. Results The 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%). Conclusion The DMKG Headache Registry allows to continuously monitor headache care at German headache centers in both a cross-sectional and a longitudinal approach. Trial registration The DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081 ).https://doi.org/10.1186/s10194-022-01447-3RegistryHeadacheMigraineGermanyAcute headache TreatmentPreventive headache Treatment
spellingShingle Ruth Ruscheweyh
Theresa Klonowki
Gudrun Goßrau
Torsten Kraya
Charly Gaul
Andreas Straube
Tim Patrick Jürgens
Jörg Scheidt
Stefanie Förderreuther
The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
The Journal of Headache and Pain
Registry
Headache
Migraine
Germany
Acute headache Treatment
Preventive headache Treatment
title The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
title_full The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
title_fullStr The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
title_full_unstemmed The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
title_short The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients
title_sort headache registry of the german migraine and headache society dmkg baseline data of the first 1 351 patients
topic Registry
Headache
Migraine
Germany
Acute headache Treatment
Preventive headache Treatment
url https://doi.org/10.1186/s10194-022-01447-3
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