Hemophilia
Conditions
Interventions
Sponsors
Leiden University Medical Centre
Eligibility
Inclusion criteria
Inclusion criteria: - Male patients with severe, moderate or mild congenital haemophilia A or B with endogenous clotting factor activity levels <0.40 IU/ml who are registered at one the haemophilia treatment centres in the Netherlands. - 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. - For patients = 16 years old; written informed consent. - For patients 12-15 years old; written informed consent from both the patient and their parents/legal guardian(s). - For patients <12 years old; written informed consent from their parents/legal guardian(s).
Exclusion criteria
Exclusion criteria: - Female carriers of haemophilia A or B - Patients with acquired haemophilia. - Non-haemophilic patients with reduced FVIII levels due to VWD.
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. | — |
Contacts
Public ContactSamantha Gouw
Leiden University Medical Center
Outcome results
None listed