ArticleJournal of thrombosis and haemostasis : JTH2021
A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH.
Article in Journal of thrombosis and haemostasis : JTH, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06020456 (Study of Genetic Factors Influencing the Factor VIII Response to Desmopressin in Carriers of Hemophilia A), which is not on this map. Cited by 69 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Study of Genetic Factors Influencing the Factor VIII Response to Desmopressin in Carriers of Hemophilia A: the GIDEHAC Study
Who cites it
69 citing papers in PubMed, 1 synthesis or guideline pooled it, 151 citations in OpenAlex.
- [Chinese guidelines on the treatment of hemophilia (2025)].Zhonghua xue ye xue za zhi = Zhonghua xueyexue zazhi · 2025Guideline
- The von Willebrand factor A-1 domain binding aptamer BT200 elevates plasma levels of von Willebrand factor and factor VIII: a first-in-human trial.Haematologica · 2022Trial
- Focus on Women with Hemophilia and Carriers: How to Address All the Existing Gaps in Diagnosis and Care.Journal of clinical medicine · 2026Review
- Article
- Integrative modeling to improve bleeding risk prediction in adult female hemophilia A carriers.Journal of thrombosis and haemostasis : JTH · 2026Observational
- Heavy Menstrual Bleeding in the Gynecology Clinic: A Call for Awareness and Standardized Screening for Underlying Bleeding Disorders.Obstetrical & gynecological survey · 2026Review
- Understanding the impact of social determinants of health in hematology: a scoping review of trends across journals and over time.Blood advances · 2026Article
- Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026Review
- Two decades of prenatal diagnosis in hemophilia A and B: a systematic review of global trends and current practices.Thrombosis journal · 2026Review
- Nine areas with outstanding challenges for hemophilia B research.Therapeutic advances in hematology · 2026Review
- Pregnancy management for patients with bleeding disorders.Hematology. American Society of Hematology. Education Program · 2025Review
- Effectiveness of Octocog Alfa (BAY 81-8973) to Treat People With Haemophilia A Enrolled in the ATHNdataset, Including Under-Represented Subgroups.European journal of haematology · 2025Article
- Postpartum haemorrhage in pregnant carriers of haemophilia and women with von Willebrand disease: a nationwide inpatient database study.Annals of clinical epidemiology · 2025Article
- Advancing care for women and girls with haemophilia: evidence from a comprehensive longitudinal analysis.Research and practice in thrombosis and haemostasis · 2025Article
- Characterization of the clinical and laboratory phenotype of hemophilia carriers and trends of utilization of hemostatic therapies: analysis of the American Thrombosis and Hemostasis Network dataset.Research and practice in thrombosis and haemostasis · 2025Article
- The attitudes and treatment practices of Hungarian primary care dentists regarding dental care for patients with haemophilia.Scientific reports · 2025Article
- Management of heavy menstrual bleeding in a multidisciplinary young women's clinic: a Dutch experience.Research and practice in thrombosis and haemostasis · 2025Article
- Artificial Intelligence in the Management of Hereditary and Acquired Hemophilia: From Genomics to Treatment Optimization.International journal of molecular sciences · 2025Review
- Are Women Welcome in Haemophilia Trials?Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Intracranial hemorrhage before start of prophylaxis in children with hemophilia: incidence, timing, and potential for prevention.Haematologica · 2025Observational
9 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
12 authors at 11 institutions in 7 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Hemophilia A and B predominantly attracts clinical attention in males due to X-linked inheritance, introducing a bias toward female carriers to be asymptomatic. This common misconception is contradicted by an increasing body of evidence with consistent reporting on an increased bleeding tendency in hemophilia carriers (HCs), including those with normal factor VIII/IX (FVIII/IX) levels. The term HC can hamper diagnosis, clinical care, and research. Therefore, a new nomenclature has been defined based on an open iterative process involving hemophilia experts, patients, and the International Society on Thrombosis and Haemostasis (ISTH) community. The resulting nomenclature accounts for personal bleeding history and baseline plasma FVIII/IX level. It distinguishes five clinically relevant HC categories: women/girls with mild, moderate, or severe hemophilia (FVIII/IX >0.05 and <0.40 IU/ml, 0.01-0.05 IU/ml, and <0.01 IU/ml, respectively), symptomatic and asymptomatic HC (FVIII/IX ≥0.40 IU/ml with and without a bleeding phenotype, respectively). This new nomenclature is aimed at improving diagnosis and management and applying uniform terminologies for clinical research.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.