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Blood Transfus. 2014 Apr;12 Suppl 3:s582-8. doi: 10.2450/2014.0087-14s.

Definition of an organisational model for the prevention and reduction of health and social impacts of inherited bleeding disorders.

Author information

  • 1National Blood Centre, National Institute of Health, Rome, Italy.
  • 2Italian Federation of Haemophilia Societies (FedEmo), Rome, Italy Necstep Studio Associato, Modena, Italy.
  • 3National Blood Centre, National Institute of Health, Rome, Italy IRCCS Ca' Granda Foundation Maggiore Policlinico Hospital, Milan, Italy.
  • 4Blood and Transplant Unit, Ministry of Health, Rome, Italy.
  • 5National Institute for Health, Migration and Poverty, Rome, Italy.
  • 6National Blood Centre, National Institute of Health, Rome, Italy Faculty of Medicine and Psychology, Sapienza University of Rome, Rome, Italy.
  • 7Department of Internal Medicine, University of Perugia, Perugia, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
  • 8Department of Transfusion Medicine and Hematology, Carlo Poma Hospital, Mantua, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
  • 9Regional Reference Centre for Coagulation Disorders, Federico II University Hospital, Naples, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
  • 10Italian Federation of Haemophilia Societies (FedEmo), Rome, Italy.
  • 11Veneto Region Health Authority, Venice, Italy.
  • 12Veneto Region Health Directorate, Venice, Italy.
  • 13Laboratorio Management e Sanità, Istituto di Management, Scuola Superiore Sant'Anna, Pisa, Italy.
  • 14Italian Association of Haemophilia Centres (AICE), Florence, Italy.



Due to the increase in life expectancy, patients with haemophilia and other inherited bleeding disorders are experiencing age-related comorbidities that present new challenges. In order to meet current and emerging needs, a model for healthcare pathways was developed through a project funded by the Italian Ministry of Health. The project aimed to prevent or reduce the social-health burden of the disease and its complications.


The National Blood Centre appointed a panel of experts comprising clinicians, patients, National and Regional Health Authority representatives. Following an analysis of the scientific and regulatory references, the panel drafted a technical proposal containing recommendations for Regional Health Authorities, which has been formally submitted to the Ministry of Health. Finally, a set of indicators to monitor haemophilia care provision has been defined.


In the technical document, the panel of experts proposed the adoption of health policy recommendations summarised in areas, such as: multidisciplinary integrated approach for optimal healthcare provision; networking and protocols for emergency care; home therapy; registries/databases; replacement therapy supply and distribution; recruitment and training of experts in bleeding disorders. The recommendations became the content of proposal of agreement between the Government and the Regions. Monitoring and evaluation of haemophilia care through the set of established indicators was partially performed due to limited available data.


The project provided recommendations for the clinical and organisational management of patient with haemophilia. A particular concern was given to those areas that play a critical role in the comorbidities and complications prevention. Recommendations are expected to harmonise healthcare care delivery across regional networks and building the foundation for the national haemophilia network.

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