ArticleHaemophilia : the official journal of the World Federation of Hemophilia2020
Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07414511 (Hemophilia A Research Program), which is not on this map. Cited by 58 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.
Hemophilia A Research Program (HARP): An Observational Intergenerational Cohort Study of Hemophilia A and Factor VIII Immunogenicity
Who cites it
58 citing papers in PubMed, 1 synthesis or guideline pooled it, 90 citations in OpenAlex.
- Global trends in hemophilic arthropathy research: a bibliometric and visualization analysis.Frontiers in medicine · 2025Pooled it
- Discovery and development of a bispecific antibody for the treatment of hemophilia.Proceedings of the National Academy of Sciences of the United States of America · 2026Article
- Cost comparison of efanesoctocog alfa vs conventional factor VIII therapies for major surgeries in patients with severe hemophilia A.Blood vessels, thrombosis & hemostasis · 2026Article
- Application of a Prevalence-Adjusted Cost-Effectiveness Threshold Framework for Pulmonary Arterial Hypertension.PharmacoEconomics · 2026Article
- Article
- Social vulnerability, access to care, and outcomes in hemophilia.Blood vessels, thrombosis & hemostasis · 2026Article
- Race, Ethnicity, and Hemophilia: A Scoping Review.Journal of racial and ethnic health disparities · 2026Review
- Regional variations and trends in hemophilia prevalence: A global analysis with future projection.PLOS global public health · 2026Article
- Article
- Comparative Effectiveness of Valoctocogene Roxaparvovec and Efanesoctocog Alfa in the Treatment of Severe Hemophilia A: A Matching-Adjusted Indirect Comparison of Bleeding Frequency.Advances in therapy · 2025Article
- Population Modeling of Factor IX Activity Following Administration of Fidanacogene Elaparvovec Gene Therapy in Participants with Hemophilia B.Clinical pharmacokinetics · 2025Article
- Modelling US health equity impacts of emicizumab for severe haemophilia A: aggregate distributional cost-effectiveness analysis.BMJ open · 2025Article
- Treatment and Disease Burden in a Cohort of People With Haemophilia Without Inhibitors in the United States.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Patient anti-FVIII drug antibodies bind preferentially to a subset of FVIII covalent states.Blood advances · 2025Article
- Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort.Blood vessels, thrombosis & hemostasis · 2025Article
- Disease Burden and Treatment Patterns Amongst Patients with Haemophilia A in China: A Retrospective Database Analysis Study.Advances in therapy · 2025Article
- Evaluating the Cost-Effectiveness of Etranacogene Dezaparvovec Gene Therapy for Hemophilia B Treatment in the USA.Applied health economics and health policy · 2025Article
- The proportion of young male hemophilia patients who underwent ultrasound examinations: an observational study using a nationwide claims database.Thrombosis journal · 2025Article
- Mental Health, Work Productivity, and Quality of Life in People with Severe Haemophilia A Receiving Prophylaxis: Findings from the CHESS Data Platform.TH open : companion journal to thrombosis and haemostasis · 2025Article
- Nurses at the helm of transforming lives in the shadows of Hemophilia.Bioinformation · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
introductionEstimates of the size and characteristics of the US haemophilia population are needed for healthcare planning and resource needs assessment. A network of comprehensive haemophilia treatment centres (HTCs) located throughout the United States receives federal support for diagnosis and management of haemophilia and other rare bleeding disorders.
aimEstimate the incidence and prevalence of haemophilia among US males using the HTC network.
methodsDuring the period 2012-2018, de-identified surveillance data were collected on all males who visited an HTC that included year of birth, gender, race, Hispanic ethnicity, residence zip code, haemophilia type and severity. Data from all patients were used to calculate period prevalence by haemophilia type, severity and state of residence. Data from a subset of patients born 1995-2014 were used to estimate incidence rates over the 20-year period.
resultsDuring the period, 21 748 males with haemophilia visited the HTCs resulting in an age-adjusted prevalence of 15.7 cases per 100 000 males (12 for haemophilia A and 3.7 for haemophilia B). Prevalence was higher among whites (15.1) than blacks (12.4) or Hispanics of either race (12.4). State-specific prevalence varied from 1.6 to 23.3 cases per 100 000. Based on 9587 males born during the index period, the average haemophilia incidence was 1 case per 4334 live male births.
conclusionBased on these data, we estimate that there are between 29 761 and 32 985 males with haemophilia living in the United States today, the majority of whom receive comprehensive care in specialized clinical centres.
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Registered trials
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