Development of a Clinical Scandinavian Registry for Hidradenitis Suppurativa; HISREG

Ingvarsson, G.; Dufour, D.N.; Killasli, Hassan; Sartorius, Karin; Lapins, Jan; Skau, Philip A; Moseng, Dagfinn; Dinparvar, Darjosh; Furberg, Anne‐Sofie; Jemec, Gregor B. E.; Emtestam, Lennart

doi:10.2340/00015555-1468

Cited by 13 publications

(18 citation statements)

References 7 publications

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“…Design of the registry was described previously . In short, the cases included in HISREG comprise individuals of any age diagnosed with HS.…”

Section: Methodsmentioning

confidence: 99%

“…Real‐life data derived from prospective registries are important to assess short‐, medium‐ and long‐term efficacy and safety of medical and surgical treatments for a chronic inflammatory skin disease like HS. The prospective Nordic Registry for HS (HISREG) includes all HS patients and records, baseline characteristics and outcomes, and patient‐reported outcomes (PROs), such as the Dermatology Quality of Life Index (DLQI) and pain numeric rating scale (NRS), which are used to assess the achievement of minimum clinically important differences (MCIDs) …”

Section: Introductionmentioning

confidence: 99%

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Evaluation of medical and surgical treatments for hidradenitis suppurativa using real‐life data from the Scandinavian registry (HISREG)

Grimstad

Tzellos

Dufour

et al. 2019

Acad Dermatol Venereol

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Background Hidradenitis suppurativa (HS) substantially affects health‐related quality‐of‐life outcomes. Most treatment options are supported by low quality of evidence without validated outcomes. Objective The aim of this study was to evaluate the efficacy of surgical and medical interventions using physician‐ and patient‐reported outcomes registered in HISREG. Methods Data were extracted for all adult patients registered in HISREG between January 2013 and April 2016. Primary endpoints included Dermatology Life Quality Index (DLQI) scores, pain as measured using a numeric rating scale (NRS), Sartorius score and Hurley classification. Minimum clinically important differences (MCIDs) for DLQI and NRS pain were analysed. Secondary endpoints included comparisons among different treatment groups, safety and complications of various treatments. Results Two hundred and fifty‐five patients were included in the study: 31, 188, and 36 patients had Hurley stages I, II and III disease, respectively. Treatment with CO2 lasers was the most common treatment modality. One hundred and forty‐nine patients (58.4%) were treated with surgical intervention, 87 (34.1%) received antibiotics and/or anti‐inflammatory treatments, and 19 (7.5%) were treated with both surgery and medical intervention. No patients received biologic treatment. In patients with surgical treatments, Sartorius scores were significantly improved compared with baseline (P = 0.001), 83 patients (55%) achieved a DLQI MCID, and 75 patients (49.7%) achieved an NRS pain MCID. In patients with medical treatments, Sartorius scores were not significantly improved compared with baseline (P = 0.582); 25 patients (28%) achieved a DLQI MCID and 28 patients (31%) achieved an NRS pain MCID. In patients treated with surgical and medical combination, 9 (48%) achieved DLQI and NRS pain MCIDs and Sartorius scores were significantly improved. Conclusions CO2 laser treatment is more effective than the non‐biologic medical treatments in this analysis based on physician‐ and patient‐derived outcomes. The study provides limited evidence for the combination of medical and surgical therapies in patients with HS.

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“…Design of the registry was described previously . In short, the cases included in HISREG comprise individuals of any age diagnosed with HS.…”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Evaluation of medical and surgical treatments for hidradenitis suppurativa using real‐life data from the Scandinavian registry (HISREG)

Grimstad

Tzellos

Dufour

et al. 2019

Acad Dermatol Venereol

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“…Of note, a Scandinavian HS registry was recently established [8], but to our knowledge, it does not include any Finnish patients. We performed a cross-sectional pilot study on 26 patients in a single hospital district.…”

Section: Discussionmentioning

confidence: 99%

The Burden of Hidradenitis Suppurativa in a Cohort of Patients in Southern Finland: A Pilot Study

Kluger

Ranta²,

Serlachius

2017

Skin Appendage Disord

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Background: Hidradenitis suppurativa (HS) is a chronic inflammatory disease that impacts the quality of life. Methods: We evaluated its burden in a cohort of 26 Finnish patients in a single-center cross-sectional study. Demographic data, disease history, clinical data, treatment patterns, and workability were collected. Patients responded to the Dermatology Life Quality Index (DLQI) and Beck Depression Inventory (BDI-21). Results: Mean age of HS patients was 44.2 years and mean diagnostic delay was 13.7 years. Pain was rated the most bothersome symptom. Mean DLQI score was 8.31. Women consistently had higher scores than men for every item of the DLQI. Mean BDI-21 score was 10.69. Higher Hurley stage at visit (p = 0.001), female gender (p = 0.018), and higher BDI-21 score (p = 0.022) were variables that significantly affected the total DLQI score, whereas female gender (p = 0.004) was the only variable that significantly affected the total BDI-21 score using stepwise regression analysis. Conclusions: The burden of HS is for the first time reported in Finland. The diagnostic delay is longer than previously reported and the results suggest that women are impacted by the disease more than men.

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“…The first non‐Italian registry on HS was developed in three northern European countries and published in 2013 . The clinical Scandinavian registry for hidradenitis suppurativa (HISREG) collected data from HS patients living in Norway, Denmark and Sweden.…”

Section: Introductionmentioning

confidence: 99%

Hidradenitis suppurativa epidemiology: from the first Italian registry in 2009 to the most recent epidemiology updates – Italian Registry Hidradenitis Suppurativa project 2

Bettoli

Cazzaniga

Scuderi

et al. 2019

Acad Dermatol Venereol

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Background The incidence of hidradenitis suppurativa (HS) is still not fully established with only a few studies reporting its estimates. Prevalence estimates range from 5:10 000 to 4:100. These extremely large variations could be explained by a combination of factors, including different selection procedures, different diagnostic criteria, and variations in the sex and age distribution of the examined samples. Objectives To analyze variations between two consecutive Italian Registries on HS. Methods Data obtained from the second Italian Registry on HS, named ‘Italian Registry Hidradenitis Suppurativa (IRHIS) Project 2’, are compared to the previous first Italian registry on HS. Results Data on 944 patients are reported. The more relevant aspects that characterize IRHIS 2 project, in comparison with the previous first Italian Registry on HS, are as follows: (i) the total number of patients, about fourfold higher; (ii) a more uniform national geographic distribution of the patient population; (iii) a larger number of dermatology units involved; (iv) a larger number of items considered in the data collection; (v) 6 years of difference between the onset of the two registries (2009–2013 vs. 2015–2019). Comparing data of the two registries, there are no statistically significant differences in terms of age at the time of the visit, gender, BMI, smoking habits, age at onset and age at first diagnosis by physician. Interestingly, the mean Sartorius score in the IRHIS project 2 (58.8) was significantly lower compared to the first Italian Registry (78.4). Conclusions The importance of the registries, at both national and international levels, in collecting useful real‐life data is confirmed by these two Italian projects.

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Development of a Clinical Scandinavian Registry for Hidradenitis Suppurativa; HISREG

Cited by 13 publications

References 7 publications

Evaluation of medical and surgical treatments for hidradenitis suppurativa using real‐life data from the Scandinavian registry (HISREG)

Evaluation of medical and surgical treatments for hidradenitis suppurativa using real‐life data from the Scandinavian registry (HISREG)

The Burden of Hidradenitis Suppurativa in a Cohort of Patients in Southern Finland: A Pilot Study

Hidradenitis suppurativa epidemiology: from the first Italian registry in 2009 to the most recent epidemiology updates – Italian Registry Hidradenitis Suppurativa project 2

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