Pilot study of once-a-day prophylaxis for youth and young adults with severe haemophilia A

Haemophilia ◽  
2016 ◽  
Vol 22 (5) ◽  
pp. e401-e405 ◽  
Author(s):  
V. Crivianu-Gaita ◽  
G. E. Rivard ◽  
M. Carcao ◽  
J. Teitel ◽  
J. St-Louis ◽  
...  
Keyword(s):  
Young Adults ◽  
Pilot Study ◽  
Haemophilia A ◽  
Severe Haemophilia ◽  
Youth And Young Adults

Physical fitness, functional ability and quality of life in children with severe haemophilia: a pilot study

Haemophilia ◽  
2006 ◽  
Vol 12 (5) ◽  
pp. 494-499 ◽  
Author(s):  
J. VAN DER NET ◽  
R. C. VOS ◽  
R. H. H. ENGELBERT ◽  
M. H. VAN DEN BERG ◽  
P. J. M. HELDERS ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Physical Fitness ◽  
Functional Ability ◽  
Haemophilia A ◽  
Severe Haemophilia

Motivational effects of top-rope climbing therapy under individualized prophylaxis: a pilot study in young adults with severe haemophilia

Haemophilia ◽  
2015 ◽  
Vol 21 (6) ◽  
pp. e504-e507 ◽  
Author(s):  
M. Stemberger ◽  
E. Schmit ◽  
K. Kurnik ◽  
M. Spannagl
Keyword(s):  
Young Adults ◽  
Pilot Study ◽  
Severe Haemophilia

scholarly journals Adherence to Prophylaxis in Adolescents and Young Adults with Severe Haemophilia: A Quantitative Study with Patients

PLoS ONE ◽  
2017 ◽  
Vol 12 (1) ◽  
pp. e0169880 ◽  
Author(s):  
Sandra B. van Os ◽  
Nick A. Troop ◽  
Keith R. Sullivan ◽  
Daniel P. Hart
Keyword(s):  
Young Adults ◽  
Quantitative Study ◽  
Adolescents And Young Adults ◽  
Haemophilia A ◽  
Severe Haemophilia

Haemophilia registry of the Medical Committee of the Swiss Hemophilia Society

2012 ◽  
Vol 32 (S 01) ◽  
pp. S20-S24 ◽  
Author(s):  
N. von der Weid
Keyword(s):  
Quality Control ◽  
Young Adults ◽  
Prophylactic Treatment ◽  
Haemophilia A ◽  
Severe Haemophilia ◽  
Coagulation Disorders ◽  
On Demand ◽  
Viii And Ix ◽  
Year 2000 ◽  
Low Rate

SummaryThe Haemophilia Registry of the Swiss Haemo philia Society was created in the year 2000. The latest records from October 31st 2011 are presented here. Included are all patients with haemophilia A or B and other inherited coagulation disorders (including VWD patients with R-Co activity below 10%) known and followed by the 11 paediatric and 12 adult haemophilia treatment or reference centers. Currently there are 950 patients registered, the majority of which (585) having haemophilia A. Disease severity is graded according to ISTH criteria and its distribution between mild, moderate and severe haemophilia is similar to data from other European and American registries. The majority (about two thirds) of Swiss patients with haemophilia A or B are treated on-demand, with only about 20% of patients being on prophylaxis. The figure is different in paediatrics and young adults (1st and 2nd decades), where 80 to 90% of patients with haemophilia A are under regular prophylaxis. Interestingly enough, use of factor concentrates, although readily available, is rather low in Switzerland, especially when taking the country’s GDP into account: The total amount of factor VIII and IX was 4.94 U pro capita, comparable to other European countries with distinctly lower incomes (Poland, Slovakia, Hungary). This finding is mainly due to the afore mentioned low rate of prophylactic treatment of haemophilia in our country. Our registry remains an important instrument of quality control of haemophilia therapy in Switzerland.

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