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European principles of haemophilia care

Colvin, B. T.; Astermark, Jan LU ; Fischer, K.; Gringeri, A.; Lassila, R.; Schramm, W.; Thomas, A. and Ingerslev, J. (2008) In Haemophilia 14(2). p.361-374
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... (More)
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. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
treatment, principles, management, haemophilia, haemophilia care
in
Haemophilia
volume
14
issue
2
pages
361 - 374
publisher
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
external identifiers
  • wos:000253626100018
  • scopus:40349091533
ISSN
1351-8216
DOI
10.1111/j.1365-2516.2007.01625.x
language
English
LU publication?
yes
id
0de181e7-84a9-4fb2-a224-0f41f75224af (old id 1193301)
date added to LUP
2008-09-05 14:28:51
date last changed
2017-09-17 05:00:31
@article{0de181e7-84a9-4fb2-a224-0f41f75224af,
  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.},
  author       = {Colvin, B. T. and Astermark, Jan and Fischer, K. and Gringeri, A. and Lassila, R. and Schramm, W. and Thomas, A. and Ingerslev, J.},
  issn         = {1351-8216},
  keyword      = {treatment,principles,management,haemophilia,haemophilia care},
  language     = {eng},
  number       = {2},
  pages        = {361--374},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  series       = {Haemophilia},
  title        = {European principles of haemophilia care},
  url          = {http://dx.doi.org/10.1111/j.1365-2516.2007.01625.x},
  volume       = {14},
  year         = {2008},
}