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

Affiliation
Department of Neurology, Mayo Clinic, Phoenix, Arizona, USA
Schwedt, Todd J.;
ORCID
0000-0003-1513-2113
Affiliation
Headache Science & Neurorehabilitation Unit, National Neurological Institute C. Mondino Foundation, Pavia, Italy
Tassorelli, Cristina;
ORCID
0000-0001-9467-5567
Affiliation
Jefferson Headache Center, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
Silberstein, Stephen D.;
ORCID
0000-0003-4786-8889
Affiliation
Division of Neurology, Children’s Hospital of Philadelphia & Department of Neurology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA
Szperka, Christina L.;
ORCID
0000-0001-7169-2620
Affiliation
Institute of Public Health, Charité – Universitätsmedizin Berlin, Berlin, Germany
Kurth, Tobias;
Affiliation
Headache Unit, Neurology Department, Vall d’Hebron University Hospital & Headache Research Group, Vall d’Hebron Research Institute, Universitat Autonoma de Barcelona, Barcelona, Spain
Pozo-Rosich, Patricia;
Affiliation
Danish Headache Center, Department of Neurology, Rigshospitalet Glostrup, Faculty of Health and Medical Sciences, University of Copenhagen, Glostrup, Denmark
Amin, Faisal Mohammad;
Affiliation
Department of Neurology, Department of Epidemiology and Population Health, Department of Psychiatry and Behavioral Sciences, Albert Einstein College of Medicine, Bronx, New York, USA
Lipton, Richard B.;
Affiliation
Department of Neurology, Mayo Clinic, Phoenix, Arizona, USA
Dodick, David W.;
Affiliation
Danish Headache Center, Department of Neurology, Rigshospitalet Glostrup, Faculty of Health and Medical Sciences, University of Copenhagen, Glostrup, Denmark
Ashina, Messoud;
GND
11811901X
ORCID
0000-0002-6556-8612
LSF
13450
Affiliation
Institute for Medical Informatics, Biometry and Epidemiology, University Duisburg-Essen, Essen, Germany
Diener, Hans-Christoph;
Affiliation
Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
Terwindt, Gisela M.

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.

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© International Headache Society 2022

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