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. 2020 May;26(3):487-493.
doi: 10.1111/hae.13998. Epub 2020 Apr 24.

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

John Michael Soucie  1   2 , Connie H Miller  1   2 , Brandi Dupervil  1 , Binh Le  1 , Tyler W Buckner  3
Affiliations

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres

John Michael Soucie et al. Haemophilia. 2020 May.

Abstract

Introduction: Estimates 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.

Aim: Estimate the incidence and prevalence of haemophilia among US males using the HTC network.

Methods: During 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.

Results: During 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.

Conclusion: Based 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.

Keywords: haemophilia; incidence; prevalence; registries.

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Figures

FIGURE 1
FIGURE 1
Age distributions of HSS males (1998 study), HTC PP males (current study) and US males. HSS, Haemophilia Surveillance System; HTC PP, Haemophilia Treatment Center population profile. US male age distribution based on 2015 census estimate (https://www.census.gov/data/tables/2015/demo/age-and-sex/2015-age-sex-composition.htmlwileyonlinelibrary.com]) [Colour figure can be viewed at wileyonlinelibrary.com]
FIGURE 2
FIGURE 2
State-specific prevalence of haemophilia per 100 000 population based on the number of males with haemophilia receiving care in 139 haemophilia treatment centres in the United States, 2012–2018 [Colour figure can be viewed at wileyonlinelibrary.com]
See this image and copyright information in PMC

References

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