Guidelines of the International Headache Society for Clinic-Based Headache Registries, 1st edition

Todd J. Schwedt, Cristina Tassorelli, Stephen D. Silberstein, Christina L. Szperka, Tobias Kurth, Patricia Pozo-Rosich, Faisal Mohammad Amin, Richard B. Lipton, David William Dodick, Messoud Ashina, Hans Christoph Diener, Gisela M. Terwindt

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
Pages (from-to)1099-1115
Number of pages17
JournalCephalalgia
Volume42
Issue number11-12
DOIs
StatePublished - Oct 2022

Keywords

  • biobank
  • biorepository
  • common data elements
  • database
  • Headache
  • migraine
  • patient reported outcomes
  • real world evidence
  • registry

ASJC Scopus subject areas

  • Clinical Neurology

Fingerprint

Dive into the research topics of 'Guidelines of the International Headache Society for Clinic-Based Headache Registries, 1st edition'. Together they form a unique fingerprint.

Cite this