Haemophilia in the Netherlands 6

Completed

Conditions: factor VIII deficiency/factor IX deficiency
Haemophilia
10064477

Registration Number: NL-OMON49798

Lead Sponsor: eids Universitair Medisch Centrum

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Completed

Sex: Not specified

Target Recruitment: 1250

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

- 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.

Study & Design

Study Type: Observational invasive

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>Presence of disease-related co-morbidities, health-related quality of life,<br /><br>quality of care, self-reported bleeding severity, self-reported joint function<br /><br>and the presence of inhibitors, non-neutralizing antibodies and immunological<br /><br>markers.</p><br>

Secondary Outcome Measures