Department of Neurology, Ludwig Maximilians University Munich, Munich, Germany.
German Migraine and Headache Society, Frankfurt, Germany.
J Headache Pain. 2022 Jul 1;23(1):74. doi: 10.1186/s10194-022-01447-3.
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.
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.
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%).
The DMKG Headache Registry allows to continuously monitor headache care at German headache centers in both a cross-sectional and a longitudinal approach.
The DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081 ).
尽管存在许多治疗头痛疾病的有效方法，但并非所有患者都能从中受益，而且残疾程度仍然很高。为了制定改善头痛治疗的策略，有必要观察真实世界中观察标准护理的数据。因此，德国偏头痛和头痛学会（DMKG）建立了 DMKG 头痛登记处。在这里，我们介绍方法和基线数据。
经认可的德国头痛中心（诊所或私人诊所）可以向其患者提供参与机会。患者提供头痛病史、当前头痛负担（包括移动头痛日记）、药物治疗和合并症，并在预约医生前回答经过验证的问卷。医生使用这些数据作为病史采集的基础，并添加、更改或确认一些核心信息。在下次就诊前，患者被要求更新他们的数据。在接下来的几年里，患者将持续被纳入。
本分析基于首次就诊的前 1351 名患者（1110 名女性，39.6±12.9 岁）。大多数参与者的诊断为偏头痛。参与者每月有 14.4±8.5 天头痛和 7.7±6.1 天急性药物治疗日，63.9%的人患有偏头痛残疾评估（MIDAS）等级 4（严重残疾）。93.6%的人至少使用一种急性头痛药物，最常使用的是曲坦类药物（60.0%）或非阿片类镇痛药（58.3%）。45.0%的人至少使用一种头痛预防药物，最常使用的是抗抑郁药（11.4%，主要是阿米替林 8.4%）或 CGRP（受体）抗体（9.8%）。预防性药物停药的最常见原因是缺乏疗效（54.2%）和副作用（43.3%）。
DMKG 头痛登记处允许以横断面和纵向两种方式连续监测德国头痛中心的头痛护理。
DMKG 头痛登记处在德国临床试验注册中心（DRKS 00021081）注册。
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