Szperka, Christina L

Clinic-based headache registries collect data for a wide variety of purposes including delineating disease characteristics, longitudinal natural disease courses, headache management approaches, quality of care, treatment safety and effectiveness, factors that predict treatment response, health care resource utilization, clinician adherence to guidelines, and cost-effectiveness. Registry data are valuable for numerous stakeholders, including individuals with headache disorders and their caregivers, healthcare providers, scientists, healthcare systems, regulatory authorities, pharmaceutical companies, employers, and policymakers. This International Headache Society document may serve as guidance for developing clinic-based headache registries. Use of registry data requires a formal research protocol that includes: 1) research aims; 2) methods for data collection, harmonization, analysis, privacy, and protection; 3) methods for human subject protection; and 4) publication and dissemination plans. Depending upon their objectives, headache registries should include validated headache-specific questionnaires, patient reported outcome measures, data elements that are used consistently across studies (i.e., “common data elements”), and medical record data. Amongst other data types, registries may be linked to healthcare and pharmacy claims data, biospecimens, and neuroimaging data. Headache diagnoses should be made according to the International Classification of Headache Disorders diagnostic criteria. The data from well-designed headache registries can provide wide-ranging and novel insights into the characteristics, burden, and treatment of headache disorders and ultimately lead to improvements in the management of patients with headache.

Abstract Objective To equip clinicians with recommendations specific to concerns related to the novel coronavirus disease 2019 (COVID‐19), which impact the physical, emotional, and social health of youth with headache disorders. Background COVID‐19 has affected societies on a global scale including children and youth with chronic headache disorders. Many concerns are predicted to arise in the 2020–2021 school year, whether classes are conducted in‐person or virtually. Methods Clinical impressions were combined with a review of the literature, although limited due to the recent nature of this issue. Results We describe recommendations to support caregivers and youth as they face changes expected with the return to school in the fall of 2020. Conclusion Although there are significant concerns for caregivers and youth with migraine given the context of changes related to the pandemic, there are many recommendations that can help minimize exacerbations of the physical, emotional, and social health of youth with chronic migraine.

Objective To outline strategies for the treatment of migraine which do not require in‐person visits to clinic or the emergency department, and to describe ways that health insurance companies can remove barriers to quality care for migraine. Background COVID‐19 is a global pandemic causing widespread infections and death. To control the spread of infection we are called to observe “social distancing” and we have been asked to postpone any procedures which are not essential. Since procedural therapies are a mainstay of headache care, the inability to do procedures could negatively affect our patients with migraine. In this manuscript we review alternative therapies, with particular attention to those which may be contra‐indicated in the setting of COVID‐19 infection. Design/Results The manuscript reviews the use of telemedicine visits and acute, bridge, and preventive therapies for migraine. We focus on evidence‐based treatment where possible, but also describe “real world” strategies which may be tried. In each section we call out areas where changes to rules from commercial health insurance companies would facilitate better migraine care. Conclusions Our common goal as health care providers is to maximize the health and safety of our patients. Successful management of migraine with avoidance of in‐person clinic and emergency department visits further benefits the current urgent societal goal of maintaining social distance to contain the COVID‐19 pandemic.