ArticleHaemophilia : the official journal of the World Federation of Hemophilia2025
Impact of Family History of Haemophilia on Diagnosis, Management and Outcomes in Severe Haemophilia.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02979119 (The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry), which is not on this map. Cited by 2 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
Who cites it
2 citing papers in PubMed.
- When and How to Start Prophylaxis in Children with Hemophilia.Transfusion medicine and hemotherapy : offizielles Organ der Deutschen Gesellschaft fur Transfusionsmedizin und Immunhamatologie · 2026Review
- Genetically confirmed severe hemophilia A in a preterm infant: a case report.Frontiers in pediatrics · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
introductionPatients with severe haemophilia A (HA) with no family history of haemophilia will be diagnosed upon their first bleeding event.
methodsHerein, we studied the effects of lack of family history in HA and the subsequent delay of diagnosis on bleeding pattern and early treatment, as well as on the risk of inhibitor development. For this purpose, data on 1237 severe HA patients with known family history ("positive" or "negative"), born between 2000 and 2022, were collected in 29 participating centres.
resultsAt diagnosis, 45.9% (554/1208) of patients had a positive family history of HA and 54.1% (654/1208) had a negative family history. A positive family history significantly shortened the time to diagnosis (8 months) and the treatment initiation (2 months). Prophylaxis was more frequently the first treatment in those with a positive family history compared to the negative family history group (21% vs. 13%). Bleeding was the main reason for first exposure day (ED) in both groups, but less frequently in the family history group than in those without a family history (67% vs. 80%). Positive family history was associated with fewer peak treatments at first five EDs (12% vs. 16%). In non-inhibitor patients, bleeding occurred earlier in those with positive family history (9.2 months vs. 10.6 months). The inhibitor incidence was similar in both groups (33% vs. 30%), and a positive family history was associated with earlier inhibitor development (13 months vs. 15 months).
conclusionThe majority of patients presented without a family history of HA which led to a delayed diagnosis and treatment initiation.
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