Centro Studi GISED

Hidradenitis suppurativa is a chronic disease, strongly disabling, characterized by recurrent and painful nodules, abscesses and cicatricial outcomes typically occurring at fold areas such as axillae, groin, perianal and perineal region. The disease has a chronic course with scarcely predictable periodic recurrences, appearance of fistulae, and a remarkable impact on the quality of life. The Dermatology Clinic of University of Study of Ferrara has long been interested in this condition and its related problems and, from 2009, collaborating with Centro Studi GISED, it has organized an Italian epidemiologic and perspective registry of the disease.

The first registry collected consecutive cases observed in participating centers.


Collected data included:

1) First examination:

1. patient's medical history;
2. clinic evaluation of the disease, applying the Sartorius-score for severity assessment (Sartorius K, Lapins J, Emtestam L, Jemec GB. Suggestions for uniform outcome variables when reporting treatment effects in hidradenitis suppurativa. Br J Dermatol 2003;149:211-3.);
3. therapeutic prescription.

2) Follow up medical examinations, typically every three months, including:

1. assessment of the response to the ongoing treatment (Sartorius score);
2. therapeutic prescription (continue or modify therapy).

The follow up will extend over 12 months (4 medical examinations).


The new IRHIS registry

The new Italian Registry for Hidradenitis suppurativa - Acne Inversa is already active and is based on electronic data capture (EDC) system.

Some data from the first Registry IRHIS

After about 5 years of activity of the first registry we report some data on centers involved, number of enrolled patients, demographics and pathological conditions of patients at study entry.

Currently seven centers are working on the project: Bologna, Cagliari, Ferrara, Florence, Naples, Venice and Prato. Since 2009, 245 patients were enrolled of which 177 in Ferrara. Patients were in majority females (59.6%) with a mean age of 33.4 years and 65.7% were smokers.

The age of disease onset was around 21 years old, and body areas mainly affected were groin and genitals (44.1%), arms (34.7%), buttocks (10.2%) and trunk (9%). Other affected areas were face, neck, thighs and pubis. In more than half of cases there were not related specific diseases.


Some results from the second Registry IRHIS

The second phase of the IRHIS registry started in 2015 and collected 991 patients until 2019, with available data on 944 of these. The project, still underway, involves 17 centers, with the collaboration of Centro Studi GISED for the data analysis.

A preliminary evaluation of the data showed that the total number of patients is about four times higher than in the first phase (991 against 245), the geographical distribution is more uniform on a national scale, and more departments of Dermatology are involved (17 against 7) .

There were no significant differences compared to the data of the first phase except for a lower severity of the disease observed among patients at the first visit: the average Sartorius score is 58.8 compared to 78.4 measured in the first phase.

Collected data were published in a special issue of JEADV, dedicated to the Italian experience in the study of hidradenitis suppurativa.


Results

Results of the study were published by scientific journals:

1. Cazzaniga S, Pezzolo E, Garcovich S, Naldi L. Late-onset hidradenitis suppurativa: A cluster analysis of the National Italian Registry IRHIS. J Am Acad Dermatol. 2021;85:e29-e32.
2. Cazzaniga S, Pezzolo E, Bettoli V, et al. Characterization of Hidradenitis Suppurativa Phenotypes: A Multidimensional Latent Class Analysis of the National Italian Registry IRHIS. J Invest Dermatol. 2021;141:1236-1242.e1.
3. Bettoli V, Cazzaniga S, Scuderi V, et al. Hidradenitis suppurativa epidemiology: from the first Italian registry in 2009 to the most recent epidemiology updates - Italian Registry Hidradenitis Suppurativa project 2. J Eur Acad Dermatol Venereol. 2019;33 Suppl 6:4-6.
4. Cazzaniga S, Naldi L, Damiani G, et al. Validation of a visual aided questionnaire for the self-assessment of hidradenitits suppurativa. J Eur Acad Dermatol Venereol. 2018;32:1993-8.
5. Bettoli V, Naldi L, Cazzaniga S, et al. Overweight, diabetes and disease duration influence clinical severity in hidradenitis suppurativa-acne inversa: evidence from the national Italian registry. Br J Dermatol. 2016;174:195-7.
6. Bettoli V, Pasquinucci S, Caracciolo S, et al. The Hidradenitis suppurativa patient journey in Italy: current status, unmet needs and opportunities. J Eur Acad Dermatol Venereol. 2016;30:1965-70.

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