A web-based registry of inherited bleeding disorders in the region of Emilia-Romagna: Results at three and a half years

A. Tagliaferri, G. F. Rivolta, C. Biasoli, L. Valdré, G. Rodorigo, M. D'incá, S. Moratelli, P. Albertini, D. Vincenzi, M. C. Arbasi, M. Marietta, C. Pattacini

Research output: Contribution to journalArticle

Abstract

A Registry of inherited bleeding disorders was set up in the Region of Emilia-Romagna (RER) to collect information about these diseases and to improve the quality of care. From January 2003, the eight Haemophilia Centres (HC) in the RER began to use computerized clinical records; every 6months, they send data to Parma Hospital to be processed and published in a website (http://www.registroemofiliarer.it). Great efforts are made to ensure high quality of data. Results of general interest are included in a free 'public area' and more sensitive data in a 'reserved area' (open only to HC and to health authorities). A total of 610 individuals are included: 249 haemophilia A (HA), 63 haemophilia B (HB), 173 von Willebrand's disease, 69 rare bleeding disorders, seven platelet disorders and 49 haemophilia carriers; 131 were genotyped, 188 were tested for inhibitors (16 affected). The most frequent bleeding was haemarthrosis. The joint score (evaluated in 104 haemophiliacs) was higher in severe HA. There were 22 HIV-positive and 182 hepatitis C virus-positive patients (21% have chronic hepatitis, two hepatocellular carcinoma). In 2005, two patients received primary prophylaxis, 47 secondary prophylaxis, four children were on immune-tolerance induction. From 2003 to 2005 the use of recombinant products was greatly increased and the majority of patients received them. The mean clotting factor consumption for prophylaxis was higher than on-demand treatment. The main features of registry are to collect high quality and comprehensive data of all patients followed by HC, to improve quality of care and it's availability on the web.

Original languageEnglish
Pages (from-to)343-354
Number of pages12
JournalHaemophilia
Volume14
Issue number2
DOIs
Publication statusPublished - Mar 2008

Keywords

  • Bleeding disorder
  • Costs
  • Epidemiology
  • Quality of care
  • Registry
  • Treatment

ASJC Scopus subject areas

  • Hematology

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    Tagliaferri, A., Rivolta, G. F., Biasoli, C., Valdré, L., Rodorigo, G., D'incá, M., Moratelli, S., Albertini, P., Vincenzi, D., Arbasi, M. C., Marietta, M., & Pattacini, C. (2008). A web-based registry of inherited bleeding disorders in the region of Emilia-Romagna: Results at three and a half years. Haemophilia, 14(2), 343-354. https://doi.org/10.1111/j.1365-2516.2007.01623.x