title: European principles of haemophilia care.
abstract: As the management of haemophilia is complex, it is essential that those with the disorder should have ready access to a range of services provided by a multidisciplinary team of specialists. This document sets out the principles of comprehensive haemophilia care in Europe. Within each country there should be a national organization which oversees the provision of specialist Comprehensive Care Centres that provide the entire spectrum of clinical and laboratory services. Depending upon the size and geographical distribution of the population, a network of smaller haemophilia centres may also be necessary. There should be arrangements for the supply of safe clotting factor concentrates which can also be used in home treatment and prophylaxis programmes. A national register of patients is recommended along with collection of treatment statistics. As comprehensive haemophilia care is multidisciplinary by nature, the need for education and research programmes for all staff members is emphasized: Members of the Interdisciplinary Working Group not represented in the list of authors are mentioned in Section 4 of this document.
authors.affiliation: Barts and The London - Queen Mary's School of Medicine & Dentistry, London, UK.
authors.forename: B T
authors.initials: BT
authors.lastname: Colvin
authors.forename: J
authors.initials: J
authors.lastname: Astermark
authors.forename: K
authors.initials: K
authors.lastname: Fischer
authors.forename: A
authors.initials: A
authors.lastname: Gringeri
authors.forename: R
authors.initials: R
authors.lastname: Lassila
authors.forename: W
authors.initials: W
authors.lastname: Schramm
authors.forename: A
authors.initials: A
authors.lastname: Thomas
authors.forename: J
authors.initials: J
authors.lastname: Ingerslev
mesh_terms: D001779:Blood Coagulation Factors / Q000600:supply & distribution / Q000627:therapeutic use; D003695:Delivery of Health Care / Q000458:organization & administration*; D004632:Emergency Medical Services / Q000458:organization & administration; D005060:Europe; D006467:Hemophilia A / Q000188:drug therapy*; D006470:Hemorrhage / Q000188:drug therapy; D006699:Home Care Services / Q000458:organization & administration; D006801:Humans; D008511:Medicine; D010348:Patient Care Team; D011994:Recombinant Proteins / Q000600:supply & distribution / Q000627:therapeutic use; D012042:Registries; D013038:Specialization
chemical_list: D001779:Blood Coagulation Factors; D011994:Recombinant Proteins