factor VIII deficiency/factor IX deficiency Haemophilia
Conditions
Interventions
Sponsors
Leids Universitair Medisch Centrum
Eligibility
Age
2 Years to 64 Years
Inclusion criteria
Inclusion criteria: - Men with severe, moderate, mild congenital haemophilia A or B that are registered at one of the haemophilia treatment centres in the Netherlands. - Written informed consent before data collection and sampling blood/urine. - Male patients with congenital haemophilia A or B who underwent liver transplantation in the past (irrespective of their endogenous clotting factor levels) - All currently deceased male haemophilia A or B patients that participated in the HiN-5 questionnaire in 2001
Exclusion criteria
Exclusion criteria: - Female carriers of haemophilia A or B - Symptomatic carriers of haemophilia A or B - Patients with acquired haemophilia. - Patients with reduced FVIII levels due to Von Willebrand disease. - Inability to obtain informed consent from patients older than 12 years of age. - No informed consent before data collection and sampling blood/urine.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Presence of disease-related co-morbidities, health-related quality of life, quality of care, self-reported bleeding severity, self-reported joint function and the presence of inhibitors, non-neutralizing antibodies and immunological markers. | — |
Countries
The Netherlands
Outcome results
None listed