Výstupy z registru ČNHP za rok 2020: hemofilie

Výstupy z registru ČNHP za rok 2020 – hemofilie
The status of care for persons with haemophilia registered within CNHP registryAnnual Report 2020	Sample size, valid records	Persons with haemophilia (PWH)	Centres participating in CNHP	Basic demographics	Persons with haemophilia and inhibitors in 2020
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	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 2020 – sample size	Frequency of bleeding requiring treatment in 2020
Location of bleeds in 2020	Location of bleeds in 2020	Preventive administration in 2020	Preventive administration in 2020	ABR according to treatment regimen Haemophilia 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 centres Haemophilia 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 frequency Haemophilia B	Data from year 2020 – sample size	Frequency of bleeding requiring treatment in 2020	Location of bleeds in 2020	Location of bleeds in 2020
Preventive administration in 2020	Joint and other bleeds according to treatment regimen	Annual bleeding rate according to treatment regimen	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 centres Haemophilia 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 consumption Haemophilia A and B	Treatment	Treatment	Treatment
Comparison of treatment in years 2020 and 2019	Comparison of treatment in years 2020 and 2019	Comparison of treatment in years 2020 and 2019	Consumption of drugs	Consumption of drugs	Consumption of drugs