ArticleHaemophilia : the official journal of the World Federation of Hemophilia2024
Haemophilia testing of young girls in Canada: Describing the current recommendations for factor level and genetic testing and the experiences of Canadian parents.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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Who cites it
2 citing papers in PubMed.
- Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026Review
- Haemophilia testing of young girls in Canada: Describing the current recommendations for factor level and genetic testing and the experiences of Canadian parents.Haemophilia : the official journal of the World Federation of Hemophilia · 2024Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
introductionIt is widely acknowledged that haemophilia affects women and girls, yet current testing recommendations for factor level and genetic testing vary and do not universally incorporate updated research. Canadian parents have expressed frustration at inconsistent recommendations and reported instances where delayed testing led to missed diagnosis and preventable bleeding.
aimStudy aim was to explore and describe the practice of haemophilia-related testing of young girls in Canada.
methodsA mixed methods study was carried out with two populations: (1) Nurses working in haemophilia care completed a survey regarding the current testing recommendations of their Haemophilia Treatment Centre (HTC), (2) Parents of obligate or potential haemophilia carriers completed a structured interview with questions about their family experience of haemophilia and testing decisions for daughters.
resultsTwenty-six survey responses were received and showed wide variation in the usual recommendations of Canadian HTCs. Different factor level testing recommendations may be given to obligate and potential carriers despite no difference in bleeding risk. Only a minority of HTCs currently recommend an early baseline factor level (< 10 years) to obligate carriers (27%) or potential carriers (15%). For genetic testing of potential carriers, 70% of HTC would approve a family request for genetic testing of a minor with specific conditions. The majority of parents interviewed felt dissatisfied with their testing experience (58%) and highlighted many issues related to delayed testing recommendations.
conclusionUpdated, nationally affirmed testing recommendations are needed that align with research on bleeding in women and girls affected by haemophilia.
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