What we wish we had known before starting a headache clinical registry: insights from the Italo-Brazilian partnership

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DOI:

https://doi.org/10.48208/HeadacheMed.2025.20

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Headache disorders, Routinely collected health data, Real-world evidence, Epidemiology

Resumo

Abstract

Headache registries have emerged as a logical solution for bridging the gap between what we know and what we do, empowering disease awareness, enhancing knowledge and facilitating personalized management. The role of headache registries in expanding our understanding of patients’ journeys, sociodemographic characteristics, endophenotypes, treatments and healthcare resource utilization is well documented around the world. This perspective article will explore some practical ideas to develop a headache clinical registry from the ground up, through the original contributions of Italian and Brazilian registries.

 

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Referências

Schwedt TJ, Digre K, Tepper SJ, Spare NM, Ailani J, Birlea M, et al. The American Registry for Migraine Research: Research Methods and Baseline Data for an Initial Patient Cohort. Headache: The Journal of Head and Face Pain 2020;60:337–47. Doi:10.1111/head.13688. DOI: https://doi.org/10.1111/head.13688

Hornik CP, Gelfand AA, Szperka CL, Pezzuto T, Utevsky A, Kessel S, et al. Development of a Prospective Real‐World Data Clinical Registry of Children and Adolescents With Migraine. Headache: The Journal of Head and Face Pain 2020;60:405–15. Doi:10.1111/head.13714. DOI: https://doi.org/10.1111/head.13714

Ruscheweyh R, Klonowski T, Goßrau G, Kraya T, Gaul C, Straube A, et al. The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients. J Headache Pain 2022;23:74. Doi:10.1186/s10194-022-01447-3. DOI: https://doi.org/10.1186/s10194-022-01453-5

Barbanti P, Egeo G, Aurilia C, Fiorentini G, Proietti S, Tomino C, et al. The first report of the Italian Migraine Registry (I-GRAINE). Neurological Sciences 2022;43:5725–8. Doi:10.1007/s10072-022-06214-5. DOI: https://doi.org/10.1007/s10072-022-06214-5

Grassi V, Jurno ME, Fröhlich AC, Rieder CR de M, Sarmento EM, Pereira JK, et al. Brazilian headache registry: methods and preliminary data of the pilot study. Arq Neuropsiquiatr 2023;81:740–7. Doi:10.1055/s-0043-1771175. DOI: https://doi.org/10.1055/s-0043-1771175

Schwedt TJ, Tassorelli C, Silberstein SD, Szperka CL, Kurth T, Pozo-Rosich P, et al. Guidelines of the International Headache Society for Clinic-Based Headache Registries, 1 st edition. Cephalalgia 2022;42:1099–115. Doi:10.1177/03331024221099035. DOI: https://doi.org/10.1177/03331024221099035

Gliklich R, Dreyer N, Leavy M, editors. Registries for Evaluating Patient Outcomes: A User’s Guide . 3rd ed. Rockville (MD): Agency for Healthcare Research and Quality; 2014.

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Publicado

2025-06-30

Como Citar

1.
Grassi V, Jurno ME, Barbanti P. What we wish we had known before starting a headache clinical registry: insights from the Italo-Brazilian partnership . Headache Med [Internet]. 30º de junho de 2025 [citado 11º de julho de 2025];16(2):128-30. Disponível em: https://www.headachemedicine.com.br/index.php/hm/article/view/1350

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