haemophilia, prophylaxis, adherence, bleeds, arthropathy. hemofilie, profylaxe, therapietrouw, bloedingen, arthropathie.
Conditions
Interventions
None listed
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: 1. Severe haemophilia A (factor VIII < 0.01 IU/ml); 2. Born between January 1st 1970 and January 1st 1988; 3. Registered at the haemophilia treatment centres in Utrecht (NL), Århus and Copenhagen (DK).
Exclusion criteria
Exclusion criteria: 1. History of inhibitory activity of more than 5 BU at any time or less than 5 BU for more than one year; 2. Inadequate access to treatment during the first years of life (i.e. no access to unlimited replacement therapy during the first 4 years of life, e.g. in case of immigration); 3. Insufficient follow up or insufficient data; 4. Other pathology influencing bleeding pattern.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Joint status according to Haemophilia Joint Health Score (HJHS) and Pettersson score; 2. Annual number of joint bleeds; 3. Figure 8 walk test. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Clotting factor consumption; 2. Orthopaedic surgery; 3. Hospital admissions in the third decade of life; 4. Major soft tissue bleeds. | — |
Contacts
PO Box 85500