Project Activities

An International, Prospective, Longitudinal, Observational, Registry Study of Hemophilia Patients with Non-Valvular Atrial Fibrillation: ADVANCE-AF

The introduction of effective replacement therapy and comprehensive care have contributed to a life expectancy for hemophilia patients in developed countries that is now approaching that of the normal population. Older people with hemophilia are now presenting with the same age-related co-morbidities as seen in the general population, creating a new challenge in hemophilia care.

The ADVANCE Working Group recently demonstrated that the overall AF prevalence in a hemophilia-cohort of 3,952 patients was 0.84%, rising with age from 0.42% in patients 40–60 years and 3.4% in patients >60 years. The majority of patients with AF had mild hemophilia (61%) and the AF prevalence did not differ between patients with hemophilia A or B.

Link to PubMed (Schutgens RE, Klamroth R, Pabinger I, Malerba M, Dolan G: Atrial fibrillation in patients with haemophilia: a cross-sectional evaluation in Europe. Haemophilia 2014;20:682-686.)

It is evident that AF in hemophilia is an actual medical issue, especially in the elderly.

Link to PubMed (Go AS, Hylek EM, Phillips KA, Chang Y, Henault LE, Selby JV, Singer DE. Prevalence of diagnosed atrial fibrillation in adults: national implications for rhythm management and stroke prevention: the AnTicoagulation and Risk Factors in Atrial Fibrillation (ATRIA) Study. JAMA 2001;285(18):2370-2375.)

At present, little is known about the clinical management of atrial fibrillation and stroke in patients with hemophilia, or of the value of stroke and bleed risk scores in these patients. The ADVANCE-AF Study is a longitudinal registry study designed to prospectively assess the treatment and management strategies and outcomes (cardiovascular events) of non-valvular atrial fibrillation in people with hemophilia A and B over a period of 5 years.

The primary objective is the evaluation of the incidence of major adverse cardiovascular events (MACE) in hemophilia A and B patients with non-valvular atrial fibrillation. The secondary objectives are:

• Monitoring of atrial fibrillation management in hemophilia A and B patients with non-valvular atrial fibrillation
• Monitoring of hemophilia management in hemophilia A and B patients with non-valvular atrial fibrillation
• Monitoring of incidence of hemophilia-related events
• Evaluation of the value of stroke and bleed risk scores in hemophilia A and B patients with non-valvular atrial fibrillation.