Výstupy z registru ČNHP za rok 2018: hemofilie

Výstupy z registru ČNHP za rok 2018 – hemofilie
The status of care for persons with haemophilia registered within CNHP registryAnnual Report 2018	Sample size, valid records	Persons with haemophilia (PWH)	Centres participating in CNHP	Basic demographics	Persons with haemophilia and inhibitors in 2018
ABR and treatment regimens in patients with inhibitor	ABR according to treatment regimen in PWH with inhibitor	Demographic characteristics Haemophilia A	Severity of haemophilia A	Age at diagnosis according to severity of haemophilia A	Actual age according to severity of haemophilia A
Hepatitis (ever) experienced	Hepatitis (ever) experienced	HIV	Treatment outcomes and bleeding frequency Haemophilia A	Data from year 2018 – sample size	Frequency of bleeding requiring treatment in 2018
Location of bleeds in 2018	Location of bleeds in 2018	Preventive administration in 2018	Preventive administration in 2018	ABR according to treatment regimenHaemophilia A without inhibitor	Annual bleeding rate according to treatment regimen
Joint and other bleeds according to treatment regimen	Annual bleeding rate according to treatment regimen	Joint and other bleeds according to treatment regimen	ABR according to treatment regimen and age	Joint and other bleeds according to treatment regimen and age	Location and etiology of bleeds
Detailed treatment of bleeds	Location and etiology of bleeds	Detailed treatment of bleeds	ABR according to centresHaemophilia A (PWHA)	Annual bleeding rate on permanent prophylaxis	Annual bleeding rate on permanent prophylaxis
Annual bleeding rate regardless prophylaxis	Annual bleeding rate regardless prophylaxis	Prophylactic regimens and treatment outcomes	Prophylactic regimens and treatment outcomes	Type of treatment (subgroup of treated patients)	Type of treatment (subgroup of treated patients)
Demographic characteristics Haemophilia B	Severity of haemophilia B	Age at diagnosis according to severity of haemophilia B	Actual age according to severity of haemophilia B	Hepatitis (ever) experienced	Hepatitis (ever) experienced
HIV	Treatment outcomes and bleeding frequencyHaemophilia B	Data from year 2018 – sample size	Frequency of bleeding requiring treatment in 2018	Location of bleeds in 2018	Location of bleeds in 2018
Preventive administration in 2018	Preventive administration in 2018	ABR according to treatment regimenHaemophilia B without inhibitor	Annual bleeding rate according to treatment regimen	Joint and other bleeds according to treatment regimen	Annual bleeding rate according to treatment regimen
Joint and other bleeds according to treatment regimen	Location and etiology of bleeds	Detailed treatment of bleeds	Location and etiology of bleeds	Detailed treatment of bleeds	ABR according to centresHaemophilia B (PWHB)
Annual bleeding rate on permanent prophylaxis	Annual bleeding rate on permanent prophylaxis	Annual bleeding rate regardless prophylaxis	Annual bleeding rate regardless prophylaxis	Prophylactic regimens and treatment outcomes	Prophylactic regimens and treatment outcomes
Type of treatment(subgroup of treated patients)	Type of treatment(subgroup of treated patients)	Treatment data and factor consumptionHaemophilia A and B	Treatment	Treatment	Treatment
Comparison of treatment in years 2018 and 2017	Comparison of treatment in years 2018 and 2017	Comparison of treatment in years 2018 and 2017	Consumption of drugs	Consumption of drugs	Consumption of drugs