Headache regisitries – significance and guidance for their development
Keywords:
creation, development, headache, registries, registry, scienceAbstract
Headache registries can provide valuable information about clinical characteristics, treatment profile, quality of life, disability, health care utilization, unmet needs of people with headache and contribute for the development of headache science. The development of a registry with high quality data requires systematic approach and following of certain principles.
The stages and elements of creating a headache registry include: setting aims; organizing a team and administration of the registry; development of a scientific protocol; determining the registry infrastructure; including data from validated questionnaires, scales and structured interviews; determining which sources of data to use; following ethics principles; protecting personal data; including enough participants.
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Copyright (c) 2024 Vasil Todorov, Vencislava Stoyanova, Kalina Pekova, Nikolay Kalaydzhiev, Desislava Bogdanova, Ivan Milanov
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