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Treatment of children with haemophilia in Europe: A survey of 20 centres in 16 countries

Ljung, R. LU ; Aronis-Vournas, S.; Kurnik-Auberger, K.; van den Berg, M; Chambost, H; Claeyssens, S; Van Geet, C.; Glomstein, A; Hann, I. and Hill, F, et al. (2000) In Haemophilia 6. p.619-624
Abstract
A survey was made of the current status of treatment of haemophilic boys at 20 centres in 16 European countries and includes approximately 1500 of the estimated 6500 haemophiliacs in the participating countries. Many mild haemophiliacs are not seen, or seen infrequently, at haemophilia centres and this requires study. Nine of 18 centres provide continuous prophylaxis to 80-100% of their patients, five centres provide it to 55-80% and the remaining four centres to 15-40% of the boys. The median dose given was 6240 U kg-1 year-1 (range 3120-7800). Four centres administered only recombinant concentrates to children with severe haemophilia A, while seven centres administered recombinant concentrates to 75-90% and the remaining centres to less... (More)
A survey was made of the current status of treatment of haemophilic boys at 20 centres in 16 European countries and includes approximately 1500 of the estimated 6500 haemophiliacs in the participating countries. Many mild haemophiliacs are not seen, or seen infrequently, at haemophilia centres and this requires study. Nine of 18 centres provide continuous prophylaxis to 80-100% of their patients, five centres provide it to 55-80% and the remaining four centres to 15-40% of the boys. The median dose given was 6240 U kg-1 year-1 (range 3120-7800). Four centres administered only recombinant concentrates to children with severe haemophilia A, while seven centres administered recombinant concentrates to 75-90% and the remaining centres to less than 50% of the boys (two centres <10%). When asked for the choice of concentrate for a newly diagnosed boy with severe haemophilia A, all but one centre preferred recombinant concentrate. Most boys below 6 years received concentrates via a peripheral vein but three centres preferred a central venous line for 80-100% of the boys. Thirteen of 18 centres applied home treatment to 84-100% of the boys and the remaining five centres to 57-77% of the boys. (Less)
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keywords
Concentrate, Factor IX, Factor VIII, Haemophilia A., Haemophilia B., Prophylaxis, blood clotting factor 8, blood clotting factor 8 concentrate, blood clotting factor 9, blood clotting factor 9 concentrate, recombinant blood clotting factor 8, recombinant blood clotting factor 9, adolescent, adult, age, article, central venous catheterization, child, childhood disease, controlled study, disease severity, drug preference, drug response, Europe, health survey, hemophilia, hemophilia A, hemophilia B, home care, human, infant, major clinical study, male, multicenter study, peripheral vein, priority journal
in
Haemophilia
volume
6
pages
619 - 624
publisher
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
external identifiers
  • scopus:0033670728
ISSN
1351-8216
DOI
10.1046/j.1365-2516.2000.00427.x
language
English
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yes
id
6fb468b8-34e5-4cb9-b381-7c4d67e0fe0c
date added to LUP
2016-11-25 14:57:08
date last changed
2017-07-09 04:55:22
@article{6fb468b8-34e5-4cb9-b381-7c4d67e0fe0c,
  abstract     = {A survey was made of the current status of treatment of haemophilic boys at 20 centres in 16 European countries and includes approximately 1500 of the estimated 6500 haemophiliacs in the participating countries. Many mild haemophiliacs are not seen, or seen infrequently, at haemophilia centres and this requires study. Nine of 18 centres provide continuous prophylaxis to 80-100% of their patients, five centres provide it to 55-80% and the remaining four centres to 15-40% of the boys. The median dose given was 6240 U kg-1 year-1 (range 3120-7800). Four centres administered only recombinant concentrates to children with severe haemophilia A, while seven centres administered recombinant concentrates to 75-90% and the remaining centres to less than 50% of the boys (two centres &lt;10%). When asked for the choice of concentrate for a newly diagnosed boy with severe haemophilia A, all but one centre preferred recombinant concentrate. Most boys below 6 years received concentrates via a peripheral vein but three centres preferred a central venous line for 80-100% of the boys. Thirteen of 18 centres applied home treatment to 84-100% of the boys and the remaining five centres to 57-77% of the boys.},
  author       = {Ljung, R. and Aronis-Vournas, S. and Kurnik-Auberger, K. and van den Berg, M and Chambost, H and Claeyssens, S and Van Geet, C. and Glomstein, A and Hann, I. and Hill, F and Kobelt, R. and Kreuz, W and Mancuso, G and Muntean, W. and Petrini, P and Rosado, L. and Scheibel, E. and Siimes, M. and Smith, O and Tusell, J.},
  issn         = {1351-8216},
  keyword      = {Concentrate,Factor IX,Factor VIII,Haemophilia A.,Haemophilia B.,Prophylaxis,blood clotting factor 8,blood clotting factor 8 concentrate,blood clotting factor 9,blood clotting factor 9 concentrate,recombinant blood clotting factor 8,recombinant blood clotting factor 9,adolescent,adult,age,article,central venous catheterization,child,childhood disease,controlled study,disease severity,drug preference,drug response,Europe,health survey,hemophilia,hemophilia A,hemophilia B,home care,human,infant,major clinical study,male,multicenter study,peripheral vein,priority journal},
  language     = {eng},
  month        = {11},
  pages        = {619--624},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  series       = {Haemophilia},
  title        = {Treatment of children with haemophilia in Europe: A survey of 20 centres in 16 countries},
  url          = {http://dx.doi.org/10.1046/j.1365-2516.2000.00427.x},
  volume       = {6},
  year         = {2000},
}