Hemophilia in the Netherlands-6 study
- Conditions
- Hemophilia
- Registration Number
- NL-OMON22123
- Lead Sponsor
- eiden University Medical Centre
- Brief Summary
o publications as of yet
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 1260
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).
- Female carriers of haemophilia A or B
- Patients with acquired haemophilia.
- Non-haemophilic patients with reduced FVIII levels due to VWD.
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Presence of disease-related co-morbidities, health-related quality of life, quality of care, self-reported bleeding severity, self-reported<br>joint function and the presence of inhibitors, non-neutralizing antibodies and immunological markers.
- Secondary Outcome Measures
Name Time Method