Patient Functioning and Well-being, Economic, and Clinical Impact of Hemophilia A and Its Treatment
Trial ID or NCT#
The purpose of the study is to improve the understanding of key patient reported outcomes such as quality of life as well as clinical outcomes in hemophilia A, in a global real world setting.
A Prospective, International, Longitudinal, Observational Disease Registry of Patient-reported Outcomes (PROs) and the Association With Hemophilia A and Its Treatment in Patients With Moderate to Severe Hemophilia A
- - Age 16 or over. - Have documentation of physician-confirmed diagnosis of moderate or severe Hemophilia A (severity defined as moderate = FVIII activity 1% to 5% and severe = FVIII activity ≤1%). - Signed written informed consent provided by the patient or the patient's parents for patients under the age of 18 (dependent of local regulations). - Signed written assent is also required for patients under the age 18 years (dependent on local regulations). - Plan to receive at least half of their Hemophilia care at the registry site. - Willing and able to enter data as per the data collection schedule. - Currently receiving prophylactic or on demand treatment (including within last 6months for on demand). - Expected life expectancy of at least 2 years.
- - Patients with Hemophilia B - Patients with von Willebrand disease (vWD) - Patients with other rare bleeding disorders - Unable to comply with the study protocol