What we do
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:
Br J Dermatol 2003;149:211-3.);
2) Follow up medical examinations, typically every three months, including:
response to the ongoing treatment (Sartorius score);
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 Italian Registry for Hidradenitis Suppurativa
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.