Table 2.

Hemophilia and inherited bleeding disorders public health surveillance systems and registries.

Surveillance system/registry	Period of data collection	Duration of data collection	Country/region	Type of data collected
Hemophilia Surveillance System (HSS) (161, 172)	From 1993 to 1998	6 years	6 states in the US	Incidence rate, sources of provided care, as well as disease and treatment complications and outcomes
US Universal Data Collection system (UDC) (161, 162, 172)	From 1998 to 2011	14 years	129 HTCs across the US	Transfusion-transmitted infections and joint arthropathy
Community Counts (162, 169, 172)	From 2011 and onwards	15+ years	140 HTCs across the US	Disease and treatment complications and outcomes
European Haemophilia Safety Surveillance (EUHASS) (171, 173, 174)	From 2008 and onwards	18+ years	99 HTCs in 27 European countries	Adverse events related information, unexpected ineffectiveness, neoplasms, and mortality
WFH annual global survey (13, 161, 168, 174)	From 1998 and onwards	28+ years	147 countries worldwide	Demographic, epidemiological and treatment-related information
WFH World Bleeding Disorders Registry (WBDR) (170)	From 2018 and onwards	8+ years	87 HTCs in 40 countries	Sociodemographic, diagnostic, and clinical information collected at baseline and regular follow-up visits
PedNet Haemophilia Registry (167, 174)	From 2004 and onwards	22+ years	33 HTCs in 19 countries	Diagnostic, clinical, and treatment-related information collected at baseline and regular follow-up visits
Country-specific registries (174)	From 2009 and onwards	17+ years	China for example	Demographic, epidemiological, diagnostic, and clinical information, based on data availability of the country

HTCs, Hemophilia Treatment Centers; PedNet, Paediatric Network on haemophilia management; US, United States of America; WFH, World Federation of Hemophilia.