A Feasibility Study to Collect Data in Patients With Haemophilia
HemophiliaThe purpose of this study is to collect reference data in patients with haemophilia. The study will also collect and store blood samples for potential future exploratory research in the disease area.
Study Evaluating Liver Transplantation in Haemophilia Patients in Spain
HemophiliaHemophilia BThis study will analyze survival and outcome of patients with severe haemophilia who undergo liver transplantation in Spain
Patient Functioning and Well-being, Economic, and Clinical Impact of Hemophilia A and Its Treatment...
Hemophilia AThe 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.
To Quantify the Range of Main Psychosocial Factors Affecting Patients and Caregivers in Their Daily...
Congenital Bleeding DisorderHaemophilia A4 moreThis survey is conducted in South America. The purpose is to identify the key psychosocial issues affecting patients with haemophilia.
The Effect of Functional Activities and Balance Ability With Taping in Subjects of Hemophilia
HemophiliaBackground Hemophilia is a sex-linked genetic disorders. When the joint or the muscles is bleeding, it may cause haemarthrosis, synovium, cartilage tissue thickening, joint activity (Range of Motion) decreasing and other musculoskeletal and related disorder. Patients will produce pain in the action, compensatory action occurs, thus causing recurrent of bleeding, and joint damage. There is high rate of ankle joint bleeding in hemophilia. The ankle articular joint disease will affect lower limbs activities, and the functional activities will impaired. Review studies, in addition to physical therapy, Kinesio taping is a common intervention to improve other subjects' static balance, proprioception, functional ankle stability, correct poor posture. The main intervention of this study is physical therapy and Kinesio taping, expect to improve the stability and muscular strength of lower extremities, and balance, correcting gait and lower extremity functional activities of subjects with hemophilia.
Bilateral Deficit Phenomenon in Patients With Haemophilic Arthropathy
HemophiliaTrial to assess the bilateral deficit phenomenon during dynamic plantar flexion task in patients with haemophilic arthropathy Describe the differences in terms of the physical variables (muscular strength, range of motion and proprioception) in patients with hemophilia who have conducted a home treatment with a digital tool. Bookmark the relationship between clinical history of joint bleeds and clinical manifestations in standing and walking.
Hemophilia Inhibitor Previously Untreated Patient Study
Hemophilia AHemophilia A is a congenital bleeding disorder caused by deficiency of factor VIII (FVIII) and is treated by replacement therapy with FVIII concentrate. Approximately 30% of people with severe hemophilia A develop neutralizing antibodies, called FVIII inhibitors, which interfere with the function of FVIII concentrates. The reason that some, but not all, people with severe hemophilia A develop inhibitors is incompletely understood. Understanding individual and environmental risk factors is important to be able to prevent and possibly treat inhibitors. This study will look at individual and treatment characteristics in babies with severe hemophilia A who have not yet received treatment with FVIII (called Previously Untreated Patients, or PUPS). Subjects in the study will be asked to provide diaries of treatments, medications, and illnesses. Treatment will be directed by the subjects' physician, but all subjects will receive Advate, a third-generation recombinant FVIII product. Subjects will have blood drawn for laboratory tests, which include studies of the immune system and genetic studies of the FVIII mutation, before and 7-9 days after the first treatment with FVIII, and 5 days (+/-2 days) after the 5th, 10th, 20th, 30th, 40th, and 50th days of treatment with FVIII (exposure days). The duration of the study will be first 50 treatments or 3 years, whichever comes first.
GAS-Hem Feasibility Study
Hemophilia AThe purpose of this study is to investigate the feasibility and acceptability of the Standardized Goal Attainment Scaling menu for Hemophilia (GAS-Hem) as a patient reported outcome (PRO) measure to monitor clinical progress in participant-identified goal areas in individuals with hemophilia A.
National Survey of People With Haemophilia in Portugal
HaemophiliaThe purpose of this study is to implement a national survey to collect information regarding Portuguese people with haemophilia (PWH) on socio-demographic, clinical and psychosocial factors.
Prospective, Non-interventional Study to Evaluate Immunogenicity of AryoSeven
Hemophilia A With InhibitorHemophilia B With Inhibitor2 moreThis study evaluates the immunogenicity of the biosimilar rFVIIa (AryoSeven) in subjects receiving AryoSeven in real-life clinical practice.