Premium
Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres
Author(s) -
Soucie John Michael,
Miller Connie H.,
Dupervil Brandi,
Le Binh,
Buckner Tyler W.
Publication year - 2020
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.13998
Subject(s) - haemophilia , medicine , haemophilia b , haemophilia a , residence , incidence (geometry) , demography , population , pediatrics , environmental health , physics , sociology , optics
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.