Background

The Migraine Disability Assessment (MIDAS) is widely used. However, there are limited data on how much a reduction in the MIDAS score indicates a change that matters to the patient.

Methods

Data from the DMKG (i.e. German Migraine and Headache Society) Headache Registry were used to determine the minimal important difference (MID) of the MIDAS, using the Patient Global Impression of Change (PGIC) as anchor and applying average change and receiver operating characteristic curve methods.

Results

In total, 1218 adult migraine patients (85.6% female, 40.2 ± 12.8 years, baseline MIDAS 44.2 ± 47.4, follow-up MIDAS 36.5 ± 45.3) were included. For patients with baseline MIDAS >20 (MIDAS grade IV, n = 757), different methods using PGIC “somewhat improved” as anchor yielded percent change MIDs of the MIDAS between −29.4% and −33.2%. For baseline MIDAS between 6 and 20 (grades II and III, n = 334), using PGIC “much improved” as anchor, difference change MIDs were between −3.5 and −4.5 points.

Conclusions

Based on the above results, we estimated the MID of the MIDAS at −30% for patients with a baseline MIDAS >20, and at −4 points for those with a baseline MIDAS of 6–20, for a tertiary headache care population.

Trial Registration

The DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081).

Background: Abnormalities in electrocortical parameters and persistence of afterimage after visual stimulation are known to occur in migraine patients. The results of studies on Contingent Negative Variation (CNV) and afterimage persistence in migraine patients suggest a link between these two phenomena and a connection to the pathomechanism of migraine.

Objectives: To date, no studies have investigated both afterimage duration and CNV parameters in the same subjects. The aim of this study was to investigate the relationship between the early component of CNV (iCNV) and the duration of the afterimage in migraine patients.

Methods: Sixty seven migraine patients from the headache center of the University of Rostock Medical Center were examined for iCNV amplitude, iCNV habituation and afterimage duration. The subjects also completed questionnaires developed for this study and the MIDAS (Migraine Disability Assessment) questionnaire.

Results: Associations were found between iCNV amplitude and afterimage duration and between habituation capacity and afterimage duration. A deficit in habituation capacity correlated with a significantly prolonged afterimage duration. Increased iCNV amplitude and prolonged afterimage duration were also significantly correlated.

Conclusion: Conclusions about the pathophysiology of migraine can be drawn from the results of this study. The results support the hypothesis of cortical hyperexcitability as a consequence of a low pre-activation level, which may be a possible contributory cause of migraine. Furthermore, they allow assessment of whether the afterimage examination, which is easier and quicker to perform than the CNV examination, can be used as a diagnostic tool or as a parameter to monitor the course of therapy in people with migraine.

Abstract
Background Triptans are effective for many migraine patients, but some do not experience adequate efficacy
and tolerability. The European Headache Federation (EHF) has proposed that patients with lack of efficacy and/or tolerability
of ≥ 2 triptans (‘triptan resistance’) could be considered eligible for treatment with the novel medications
from the ditan and gepant groups. There is little data on the frequency of ‘triptan resistance’.
Methods We used patient self-report data from the German Migraine and Headache Society (DMKG) Headache
Registry to assess triptan response and triptan efficacy and/or tolerability failure.
Results A total of 2284 adult migraine patients (females: 85.4%, age: 39.4 ± 12.8 years) were included. 42.5% (n = 970)
had failed ≥ 1 triptan, 13.1% (n = 300) had failed ≥ 2 triptans (meeting the EHF definition of ‘triptan resistance’),
and 3.9% (n = 88) had failed ≥ 3 triptans. Compared to triptan responders (current use, no failure, n = 597), triptan
non-responders had significantly more severe migraine (higher frequency (p < 0.001), intensity (p < 0.05), and disability
(p < 0.001)), that further increased with the level of triptan failure. Responders rates were highest for nasal and oral
zolmitriptan, oral eletriptan and subcutaneous sumatriptan.
Conclusion In the present setting (specialized headache care in Germany), 13.1% of the patients had failed ≥ 2
triptans. Triptan failure was associated with increased migraine severity and disability, emphasizing the importance
of establishing an effective and tolerable acute migraine medication. Acute treatment optimization might include
switching to one of the triptans with the highest responder rates and/or to a different acute medication class.
Trial registration The DMKG Headache Registry is registered with the German Clinical Trials Register (DRKS
00021081).

Background

Most migraine patients need an effective acute medication. Real-world data can provide important information on the performance of acute migraine medication in clinical practice.
Methods
We used data from the German Migraine and Headache Society Headache Registry, where patients rate efficacy and tolerability of and satisfaction with each of their acute headache medications.
Results
A total of 1756 adult migraine patients (females: 85%, age: 39.5 ± 12.8 years, headache days per month: 13.5 ± 8.1) were included. Of these, 93% used acute medication, most frequently triptans (59.3%) and/or non-opioid analgesics (56.4%), and 58.5% rated efficacy as good or very good. This was more frequent for triptans (75.4%) than for non-opioid analgesics (43.6%, p < 0.001). Among non-opioid analgesics, naproxen was rated most effective (61.9% very good or good, p < 0.001 compared to ibuprofen, acetylsalicylic acid and paracetamol). Patient-rated efficacy significantly declined with higher headache frequencies (p < 0.001), and this effect remained significant after omitting patients overusing acute medication.
Conclusion
In the present population recruited at specialized headache centers, patients rated triptans as more effective than non-opioid analgesics, naproxen as more effective than ibuprofen, and acute medication efficacy decreased with increasing headache frequency.

Trial registration: The German Migraine and Headache Society Headache Registry is registered with the German Clinical Trials Register (DRKS 00021081).

The citizen science project SelEe (‘Researching rare diseases in a citizen science approach‘) aims to research rare diseases in collaboration with citizens by using digital applications. SelEe adopts a participatory approach as it is important to recognise the active role of patients and their families as informed partners. They are often the experts on their own disease. Similarly, involving citizens beyond those affected can increase the visibility and understanding of rare diseases. Citizens can contribute their strengths, engage socially and learn new knowledge about digital apps, the diseases and their research. Engaging citizens in a continuous exchange of information as well as developing digital applications for research can make research more accessible to citizens while strengthening research and its relevance.

This citizen science project CLUE compared the attack frequency between school and vacation periods among adolescents. The data collection process adopted in citizen science projects opens up the possibility of conducting analyses by including a large number of participants over a long period and across different regions. The data on 684 migraine attacks reported by 68 adolescents aged 16 to 19 years were collected using an online platform and smartphone apps. A Fisher’s exact test was used to compare the distributions of the migraine attack frequency during vacation and school periods in two different scenarios. In both scenarios, the attack frequency during school periods was significantly higher than that during vacation periods. The use of web-based data collection has some methodological limitations; however, it enabled the measurement of relative migraine attack frequency in students during vacation and school periods. The higher prevalence of migraine during school periods indicates the requirement of increasing headache awareness among children.

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.

Fast jede/-r Migränepatient/-in verwendet eine Akutmedikation. Randomisiert-kontrollierte Studien haben die Wirksamkeit erwiesen. Es gibt aber wenig Real-life-Daten dazu, wie Patienten/-innen die Wirksamkeit und Verträglichkeit verschiedener Akutmedikationen beurteilen.

Real-world-Daten über die Versorgung von Kopfschmerzpatienten/-innen in Deutschland sind rar. Deswegen hat die DMKG ein deutschlandweites Kopfschmerzregister initiiert, an dem aktuell 20 Praxen und Kopfschmerzzentren teilnehmen. Das Register erfasst die Behandlung sowohl im Querschnitt als auch im Verlauf, und sowohl aus Sicht der Patienten/-innen (vor jeder Visite und über die DMKG-App als Kopfschmerzkalender) als auch aus Sicht der Ärzte und Ärztinnen (bei der Visite).

The aim of this work is to analyze reports of migraine attacks collected online in the citizen science project CLUE with respect to gender- and migraine type-specific differences in drug effectiveness and pain perception. Citizen science project data collection opens the possibility to examine these differences based on a large number of individual attacks instead of a simple survey of patients.

Citizen science allows involving interested citizen in the entire research process in science. In the past, various citizen science projects have been performed in different research fields, especially in human medicine. We conducted a rapid scoping review to determine which citizen projects in human medicine already used software-based systems to engage citizens in the research process. Furthermore, we analysed which of the software-systems are publicly available, especially in the field of rare diseases, how citizens can participate using those tools and whether the usability was rated by the participants. To get insights for our project “SelEe (Seltene Erkrankungen bürgerwissenschaftlich erforschen)”, which is a citizen science project in rare diseases funded by the Federal Ministry of Education and Research (BMBF), we aimed to identify projects in this research area. We searched PubMed for articles between 2011 and 2021 and performed a title- and abstract screening, as well as a full-text screening. Finally, 12 studies were identified in different research areas like public health, genetic research and infectious diseases. We could not identify any study directly associated with rare diseases. None of the studies investigated usability of those systems. Furthermore, five publicly available citizen science software-systems were identified. Three of them are general systems that allow creating, operating, managing citizen science projects and including citizens in the research process. In further investigations, we will check and compare these systems, if they are appropriate for use in our SelEe-project.

Migraine is common in childhood, peaks in adolescents and persists into adulthood in at least 40% of patients. There is need for early interventions to improve the burden of disease and, if possible, reduce chronification. The aim of the project is to compare two types of ambulatory treatment strategies regarding their effect on headache days and quality of life in 6 to 11 year old children with migraine: 1) the routine care in pediatricians’ practices (intervention group A) and 2) a structured interdisciplinary multimodal intervention administered at social pediatric centers (intervention group B).

The aim of this work is to analyze the reports on cluster headache attacks collected online in the citizen science project CLUE with respect to the effectiveness of drugs taken during the attacks. The collection of data within the framework of citizen science projects opens up the possibility of investigating the effectiveness of acute medication on the basis of a large number of individual attacks instead of a simple survey of patients.

Trotz hoher Prävalenz von Kopfschmerzerkrankungen und bedeutender Beeinträchtigung vieler Betroffener ist die Versorgung von Menschen mit häufigen Kopfschmerzen in Deutschland unzureichend. Zur Verbesserung der Versorgung und Erhebung von Daten zur Versorgungs- und Kopfschmerzforschung richtet die Deutsche Migräne- und Kopfschmerzgesellschaft (DMKG) e. V. ein deutschlandweites Kopfschmerzregister ein. Vor der Erstvorstellung und vor jeder Wiedervorstellung bei einem am Kopfschmerzregister teilnehmenden Arzt werden die Patienten gebeten, Daten zu ihren Kopfschmerzen, aktuellen und bisherigen Behandlungsversuchen sowie Begleiterkrankungen über ein Patientenportal einzugeben. Ein Kopfschmerzkalender wird über die DMKG-App bereitgestellt. Während der Vorstellung stehen dem Arzt die vorab erhobenen Patientendaten zur Unterstützung einer strukturierten Anamnese und Behandlungsplanung zur Verfügung; sie können ergänzt, geändert oder bestätigt werden. In anonymisierter Form werden die Daten in eine Auswertungsdatenbank überführt, die für wissenschaftliche Auswertungen zur Versorgungs- und allgemeinen Kopfschmerzforschung genutzt werden kann. Das Kopfschmerzregister wird voraussichtlich im 4. Quartal 2019 starten.

Objectives The purpose of this work is the analysis of migraine attack reports collected online within the project Migraine Radar in respect to the distribution of the migraine attacks over the week on a single-participant level. Materials & Methods Recording data using a web app as well as smartphone apps made it possible to collect data of 44 639 migraine attacks of 1085 participants who reported seven or more attacks over a participation period of at least 90 days. This allows the investigation of attack distributions on a single-participant level. Considering the day of the week with the highest attack frequency for each participant—the mode of the individual distribution—allows identifying participants suffering from weekend migraines. Namely, a weekend pattern is assumed if the mode falls on a Saturday or Sunday. Results For 15.9% of the participants, the attacks were not distributed equally (P < 0.05) over the days of the week. Instead, participants show different individual patterns for the distribution of their migraine attacks. Furthermore, the modes of the individual distributions are not distributed equally over the week. In fact, Saturday seems to be the predominant day for migraine attacks for a greater proportion of participants (195 of 1085). Conclusions Concerning the individual attack distributions, we found that participants show individual attack patterns and weekend migraine can be determined for a subgroup of participants, while other participants show accumulations of their attacks on other days of the week.

In this paper, we describe a new algorithm designed to generate lexical resources in the field of sentiment analysis. For this approach, based on corpora of customer reviews, we determine words and phrases as candidates for our sentiment lexicon solely by calculating a word co-occurrence measure and by considering word frequencies. The sentiment values of every single word or phrase are derived automatically from the review titles and the associated given ratings. We consciously renounce the use of natural language processing methods in order to ensure language independency of our algorithm. Furthermore, by using exclusively statistical methods, we are able to identify rather unusual word combinations, such as idiomatic expressions. This differentiates our work from most prior approaches which concentrate on single words or word-modifier combinations. An example lexicon is generated by the use of a corpus of 1.5 million German Amazon customer reviews.