Development of a clinical Scandinavian registry for hidradenitis suppurativa; HISREG

• Published in: Acta dermato-venereologica 2013-01, Vol.93 (3), p.350-351
• Main Authors: Ingvarsson, Gisli, Dufour, Deidre Nathalie, Killasli, Hassan, Sartorius, Karin, Lapins, Jan, Skau, Philip A, Moseng, Dagfinn, Dinparvar, Darjosh, Furberg, Anne-Sofie, Jemec, Gregor B E, Emtestam, Lennart
• Format: Article
• Language: English
• Subjects: Community medicine, Social medicine: 801; Health sciences: 800; Health service and health administration research: 806; Helsefag: 800; Helsetjeneste- og helseadministrasjonsforskning: 806; Hidradenitis Suppurativa - diagnosis; Hidradenitis Suppurativa - epidemiology; Hidradenitis Suppurativa - therapy; Humans; Medical disciplines: 700; Medicin och hälsovetenskap; Medisinske Fag: 700; Program Development; Registries; Research Design; Samfunnsmedisin, sosialmedisin: 801; Scandinavian and Nordic Countries - epidemiology; Severity of Illness Index; Treatment Outcome; VDP
• ISSN: 0001-5555; 1651-2057; 1651-2057
• DOI: 10.2340/00015555-1468

Hidradenitis suppurativa (HS; or acne inversa) is a scarring and frequently persistent inflammatory disorder of the terminal hair follicles of apocrine gland-bearing skin in adults. Treatments include local or systemic antibiotics, hormones, retinoids and systemic immunosuppressive agents (1), although on evaluation these have been shown to have only limited or temporary effect. In refractory cases, surgery is necessary, and should be radical and performed as early as possible (2, 3). It is essential to establish a registry of HS in order to address the following important issues: to assess the safety and effectiveness of different treatments; to identify which specific patient subgroups have the best risk/benefit ratio for a given treatment; and to create benchmark data for quality assurance of the medical service. This manuscript presents the Scandinavian Registry for HS, HISREG.