[Translated article] Spanish Hidradenitis Suppurativa Registry (REHS) of the Spanish Academy of Dermatology and Venereology: Description and Data From its First Year of Operation
Introduction: Hidradenitis suppurativa (HS) is a skin disease that significantly impacts patients’ quality of life. There are still uncertainties surrounding its epidemiology, natural history, and the safety and effectiveness of existing treatments. The Spanish Academy of Dermatology and Venereology...
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| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2025-06-01
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| Series: | Actas Dermo-Sifiliográficas |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S0001731025002145 |
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| Summary: | Introduction: Hidradenitis suppurativa (HS) is a skin disease that significantly impacts patients’ quality of life. There are still uncertainties surrounding its epidemiology, natural history, and the safety and effectiveness of existing treatments. The Spanish Academy of Dermatology and Venereology has promoted the creation of a Spanish Registry of patients with HS (REHS). The aim of this article is to present the REHS and provide the initial results obtained. Methods: The REHS is a prospective, multicenter, observational study that collects the clinical and epidemiological characteristics of patients with HS, as well as the safety and effectiveness of the medical and surgical treatments received. Results: Between June 2023 and June 2024, 359 patients were recruited from 23 Spanish centers. The average age of the patients is 37 years, and 53% of them are women. Over 70% of the patients are smokers or former smokers. One third have a family history of HS. The most frequent sites of disease onset are the axillae and groin. Median baseline IHS4 at recruitment was 4 (p25–p75 = 1–9), HiSQOL was 20 (p25–p75 = 8–36), and BMI was 27.3 (p25–p75 = 24–33.2). At least 82% of patients have received antibiotic therapy for their disease, and almost 20% a biologic drug. Conclusions: We present data from the first patients enrolled in the REHS, which will allow for the generation of evidence on the natural course of the disease, as well as the effectiveness and safety of treatments in HS. Resumen: Introducción: La hidradenitis supurativa (HS) es una enfermedad que condiciona un gran impacto en la calidad de vida. Existen dudas sobre su epidemiología, historia natural y sobre la efectividad y la seguridad de los tratamientos existentes. La Academia Española de Dermatología y Venereología ha impulsado la creación de un Registro Español de pacientes con HS (REHS). El objetivo de este artículo es presentar el REHS y proporcionar los primeros resultados obtenidos. Métodos: El REHS es un estudio observacional con medicamentos de seguimiento prospectivo, multicéntrico, que recoge las características clínicas y epidemiológicas de los pacientes con HS, así como la seguridad y la efectividad de los tratamientos médicos y quirúrgicos recibidos. Resultados: Entre junio de 2023 y junio de 2024 se han recogido 359 pacientes de 23 centros españoles. La edad media de los pacientes es de 37 años, y un 53% son mujeres. Más del 70% de los pacientes son fumadores o exfumadores. Un tercio tiene antecedentes familiares de HS. Las localizaciones de inicio más frecuente de la enfermedad son axilas e ingles. La mediana de IHS4 basal al reclutamiento ha sido de 4 (p25-p75 = 1-9), la del HiSQOL de 20 (p25-p75 = 8-36) y el IMC de 27,3 (p25-p75 = 24-33,2). Al menos el 82% de los pacientes han recibido tratamientos antibióticos para su enfermedad, y casi un 20% un fármaco biológico. Conclusiones: Presentamos los datos de los primeros pacientes reclutados en el REHS, que permitirá generar evidencia sobre el curso natural de la enfermedad, así como la efectividad y la seguridad de los tratamientos en HS. |
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| ISSN: | 0001-7310 |