Italian Registry of Congenital Bleeding Disorders.
In Italy, the surveillance of people with bleeding disorders is based on the National Registry of Congenital Coagulopathies (NRCC) managed by the Italian National Institute of Health (Istituto Superiore di Sanità). The NRCC collects epidemiological and therapeutic data from the 54 Hemophilia Treatment Centers, members of the Italian Association of Hemophilia Centres (AICE). The number of people identified with bleeding disorders has increased over the years, with the number rising from approx. 7000 in 2000 to over 11,000 in 2015. The NRCC includes 4020 patients with hemophilia A and 859 patients with hemophilia B. The prevalence of the rare type 3 vWD is 0.20/100,000 inhabitants. Less common congenital bleeding disorders include the following deficiencies: Factor I (fibrinogen), Factor II (prothrombin), Factor V, Factor VII, Factor X, Factor XI and Factor XIII, which affect 1953 patients. Hepatitis C Virus (HCV) infection affects 1561 patients, more than 200 of whom have two infections (HCV + HIV). Estimated hemophilia-related drug consumption in 2015 was approx. 550 million IU of FVIII for hemophilia A patients and approx. 70 million IU of FIX for hemophilia B patients. The NRCC, with its bleeding disorder data set, is a tool that can provide answers to fundamental questions in public health, monitoring care provision and drug treatment, as well as facilitating clinical and epidemiological research.
Department of Oncology and Molecular Medicine, Istituto Superiore di Sanità, 00161 Rome. adele.giampaolo@iss.it.
Adele
A
Giampaolo
Department of Oncology and Molecular Medicine, Istituto Superiore di Sanità, 00161 Rome. francesca.abbonizio@iss.it.
Francesca
F
Abbonizio
Grant Office and Technology Transfer, Istituto Superiore di Sanità, 00161 Rome. romano.arcieri@iss.it.
Romano
R
Arcieri
Department of Oncology and Molecular Medicine, Istituto Superiore di Sanità, 00161 Rome. jane.hassan@iss.it.
Hamisa Jane
HJ
Hassan
Hemophilia A; Hemophilia B; bleeding disorders; clotting factors; rare diseases; registry