Feasibility of a registry of pemphigus in Italy: two years experience. Gruppo Italiano Studi Epidemiologici in Dermatologia (GISED)

Abstract

Background: There are still unanswered questions about optimal treatment strategies and long-term prognosis of pemphigus. The Italian Group for Epidemiologic Research in Dermatology (GISED) started to register pemphigus in March 1990.

Methods: The registry is hospital-based, covering newly diagnosed cases referred to 33 dermatologic centers in the north and the middle-south of Italy. Serum samples were collected at the time of diagnosis, for centralized storage.

Results: In the period between March 1990 and December 1991, 110 cases were collected, with 105 retained. Median age at diagnosis was 54, and the man to woman ratio was 0.7. The median lag of diagnosis was 4 months. Seventy-four of 79 patients with pemphigus vulgaris/vegetans and 24 of the 26 with pemphigus erythematosus/foliaceus were given corticosteroid treatment.

Conclusions: A hospital-based registry is feasible and provides useful information about both clinical aspects and management of pemphigus, serving as a basis for developing ad hoc research programs (e.g., formal epidemiologic studies and clinical research).