دورية أكاديمية
Guidelines of the International Headache Society for Clinic-Based Headache Registries, 1st edition
| العنوان: | Guidelines of the International Headache Society for Clinic-Based Headache Registries, 1st edition |
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| المؤلفون: | Schwedt, Todd J., Tassorelli, Cristina, Silberstein, Stephen D., Szperka, Christina L., Kurth, Tobias, Pozo-Rosich, Patricia, Amin, Faisal Mohammad, Lipton, Richard B., Dodick, David W., Ashina, Messoud, Diener, Hans-Christoph, Terwindt, Gisela M. |
| سنة النشر: | 2022 |
| المجموعة: | University of Duisburg-Essen: DuEPublico (Duisburg Essen Publications online) |
| مصطلحات موضوعية: | ScholarlyArticle, ddc:610, Medizinische Fakultät » Universitätsklinikum Essen » Institut für Medizinische Informatik, Biometrie und Epidemiologie, Headache, registry, patient reported outcomes, biorepository, Biobank, real world evidence, Database, migraine, common data elements |
| الوصف: | 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. |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| العلاقة: | https://doi.org/10.1177/03331024221099035Test; https://nbn-resolving.org/urn:nbn:de:hbz:465-20230828-105851-7Test; https://duepublico2.uni-due.de/receive/duepublico_mods_00076980Test; https://duepublico2.uni-due.de/servlets/MCRFileNodeServlet/duepublico_derivate_00076709/Cephalalgia_2022_42_1099-1115.pdfTest |
| DOI: | 10.1177/03331024221099035 |
| الإتاحة: | https://doi.org/10.1177/03331024221099035Test https://nbn-resolving.org/urn:nbn:de:hbz:465-20230828-105851-7Test https://duepublico2.uni-due.de/receive/duepublico_mods_00076980Test https://duepublico2.uni-due.de/servlets/MCRFileNodeServlet/duepublico_derivate_00076709/Cephalalgia_2022_42_1099-1115.pdfTest |
| حقوق: | All rights reserved ; info:eu-repo/semantics/openAccess |
| رقم الانضمام: | edsbas.FB6F1ADF |
| قاعدة البيانات: | BASE |
| DOI: | 10.1177/03331024221099035 |
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