Italian Registry of Congenital Bleeding Disorders

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish
JournalJournal of Clinical Medicine
Volume6
Issue number3
DOIs
Publication statusPublished - Mar 19 2017

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Congenital, Hereditary, and Neonatal Diseases and Abnormalities
Hemophilia A
Registries
Hemorrhage
Hemophilia B
Prothrombin
Hepacivirus
Fibrinogen
Factor XI
Factor XIII
Factor X
Factor VII
Factor V
National Institutes of Health (U.S.)
Virus Diseases
Pharmaceutical Preparations
Italy
Therapeutics
Public Health
HIV

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Italian Registry of Congenital Bleeding Disorders. / Giampaolo, Adele; Abbonizio, Francesca; Arcieri, Romano; Hassan, Hamisa Jane.

In: Journal of Clinical Medicine, Vol. 6, No. 3, 19.03.2017.

Research output: Contribution to journalArticle

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