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Severe Haemophilia: Prophylactic treatment in the 2nd and 3rd decade.

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
NL-OMON
Registry ID
NL-OMON25201
Enrollment
90
Registered
2011-10-10
Start date
2011-11-01
Completion date
Unknown
Last updated
2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

haemophilia, prophylaxis, adherence, bleeds, arthropathy. hemofilie, profylaxe, therapietrouw, bloedingen, arthropathie.

Interventions

None listed

Sponsors

University Medical Center Utrecht (UMC Utrecht)
Lead Sponsor

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

MeasureTime 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

MeasureTime frame
1. Clotting factor consumption; 2. Orthopaedic surgery; 3. Hospital admissions in the third decade of life; 4. Major soft tissue bleeds.

Contacts

Public ContactKathelijn Fischer

PO Box 85500

K.Fischer@umcutrecht.nl+31 (0)88 7558450

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)