Study Evaluating Approach to Treatment of Haemophilia A and B in Spain
Hemophilia AHemophilia BAnalyze the clinical and therapeutic approach to treatment of haemophilia A and B in habitual clinical practice conditions in Spain.
A Study of the Impact of Hemophilia and Its Treatment on Brain Development, Thinking and Behaviour...
Haemophilia AHaemophilia BThe Hemophilia Growth and Development Study (HGDS) nearly 25 years ago showed haemophilia and HIV impacted brain development, thinking, and behaviour in children and adolescents. The eTHINK study is designed to understand whether advances in hemophilia treatment have removed any impact of hemophilia. If there still is an impact of hemophilia, the eTHINK study will help to identify which children or adolescents are still at risk, and how to screen other children. Participants and their child will participate in a comprehensive assessment of child's brain development, thinking and behavior through completing tests and questionnaires. There is only one study visit of 1 to 1.5 hours with no follow-up required
Joint Health Study
Hemophilia BThis is a prospective, non-randomized, controlled study to examine whether or not having a higher trough during prophylactic treatment with clotting factor offers better joint protection than the standard trough of 1% Factor IX (FIX or Factor 9). This study will test the hypothesis that an extended half-life (EHL) FIX product with an intended trough of >10% could offer better protection than previous treatment concentrates. This study also examines whether or not joint damage could be diagnosed earlier using ultrasound images.
Survey Evaluating the Psychosocial Effects of Living With Haemophilia
Congenital Bleeding DisorderHaemophilia A4 moreThis study is conducted in Africa, Asia, Europe, North America and South America. The purpose of the survey is to identify the key psychosocial issues affecting patients with haemophilia.
Study on Von Willebrand Disease and Hemophilia in Cuenca, Ecuador
Von Willebrand DiseaseHemophilia A1 moreHypothesis a. There are patients with von Willebrand Disease in Cuenca. Primary question a. How many women referred with a history of bleeding may have von Willebrand disease? Secondary Associations between the bleeding score and initial laboratory studies What are the differences on subgroups of enrolled patients with the bleeding score? Ancillary What is the clinical and socio-economic status of women with von Willebrand Disease in Cuenca? What is the clinical and socio-economic status of patients with Hemophilia in Cuenca?
Females With Severe or Moderate Hemophilia A or B: A Multi-Center Study
Hemophilia AHemophilia BTo collect and analyze data on females with hemophilia so as to better define the difference between the study population and the male population with hemophilia.
Awareness, Care, and Treatment In Obesity Management of Patients With Hemophilia (ACTION) to Inform...
Haemophilia AHaemophilia B1 moreAn online web-based cross-sectional survey in which participants will complete a distinct questionnaire for patients with hemophilia and obesity (PwHO) and/or their carers/spouses/partners, or a distinct questionnaire for healthcare professionals. Each questionnaire consists of more than 100 items including pre-coded (multiple choice) closed-ended questions, yes/no questions and rating scales. It is estimated that this one-off survey will take approximately 45-60 minutes to complete. As a cross-sectional study, there will be no treatment of patients.
Females With Severe or Moderate Hemophilia A or B: an International Multi-center Study
Hemophilia AHemophilia BThis is a multi-center, international study designed to collect clinical, genetic and quality of life information on females with hemophilia, an inherited bleeding disorder. The study is designed to determine whether there are problems and issues unique to females with hemophilia.
Comparing the Burden of Illness of Hemophilia in the Developing and the Developed World
Hemophilia AHemophilia BBecause of high cost, persons with hemophilia in many developing countries cannot afford adequate treatment. For example, many persons with hemophilia in India and China are only rarely treated with factor replacement in response to bleeds, and as a result many have developed significant arthropathy and disability. A pilot study in China estimated the mean Hemophilia Joint Health Score (HJHS) at 13.1 (SD 9.03) suggesting that these children had highly prevalent, severe joint disease. The lack of relationship between the HJHS and treatment history suggests overall inadequate therapy. The proposed study will quantify the burden of arthropathy, physical disability, and quality of life (QoL) in boys with hemophilia in Brazil - where comprehensive treatment is just beginning to be widely available. This study will also provide an opportunity to compare these outcomes to those observed in Canada, where the dominant therapy has become life-long prophylaxis.
A Non-interventional Retrospective Study of the Current Treatment Practice in European Haemophilia...
Haemophilia AHaemophilia BTo describe the current treatment practice during 12 months for previously treated patients diagnosed with haemophilia A or haemophilia B.