Naldi L, Bertoni M, Cainelli T
Clinica Dermatologica, Università degli Studi di Milano, Ospedali Riuniti di Bergamo, Italy.
Int J Dermatol. 1993 Jun;32(6):424-7. doi: 10.1111/j.1365-4362.1993.tb02813.x.
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.
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.
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.
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).
关于天疱疮的最佳治疗策略和长期预后仍存在未解决的问题。意大利皮肤病流行病学研究小组（GISED）于1990年3月开始对天疱疮进行登记。
该登记是以医院为基础的，涵盖转诊至意大利北部和中南部33个皮肤科中心的新诊断病例。在诊断时采集血清样本，进行集中储存。
在1990年3月至1991年12月期间，共收集到110例病例，其中105例被保留。诊断时的中位年龄为54岁，男女比例为0.7。诊断的中位延迟时间为4个月。79例寻常型/增殖型天疱疮患者中的74例以及26例红斑型/落叶型天疱疮患者中的24例接受了皮质类固醇治疗。
以医院为基础的登记是可行的，并且可以提供有关天疱疮临床方面和治疗管理的有用信息，作为开展专门研究项目（如正式的流行病学研究和临床研究）的基础。
