In the editorial “Together we care: New challenges for global haemophilia treatment centers”, Franchini & Lippi1 have summarized the challenges which haemophilics are facing and the role of World Federation of Haemophilia (WFH) to meet more challenges2. In all the developed countries of the world the government and the medical insurance companies have been involved in the delivery of comprehens...

Our aim was to test the hypothesis that breastfeeding may reduce development of inhibitors in male infants with haemophilia by inducing an oral immune tolerance to factor VIII. To achieve that goal, we performed a structured epidemiological survey comprising all males born with severe haemophilia A (in all 100 patients, 19 with inhibitors) or haemophilia B (in all 16 patients, six with inhibito...

This issue of Haemophilia contains an article entitled Staunch Protections: The Ethics of Haemophilia Gene Transfer Research by Jonathan Kimmelman. In this paper, Dr Jonathan Kimmelman, PhD, raises some appropriate ethical issues such as the need to demonstrate clearly and publish a beneficial effect in animal models prior to performing clinical trials, and the importance of obtaining consent t...

Over the past 20 years, there have been many advances in haemophilia treatment that have allowed patients to take greater control of their disease. However, the development of factor VIII (FVIII) inhibitors is the greatest complication of the disease and a challenge in the treatment of haemophilia making management of bleeding episodes difficult and surgical procedures very challenging. A meeti...

Haemophilia A and B are hereditary X-linked disorders due to deficiency (or absence) of coagulation factor VIII or IX, respectively. Bleeding risk is related to the severity of factor deficiency. Repeated joint bleeding can lead to a severe haemophilic arthropathy resulting in disabilities. Outcome measurements in persons with haemophilia (PWH) have been limited to laboratory evaluation (factor...

Quality of life (QoL) is a recent focus of research in haemophilia. It can be defined--in analogy to the World Health Organization (WHO) definition of health--as patient-perceived wellbeing and function in terms of physical, emotional, mental, social and behavioural life domains. The paper describes conceptual, methodological and practical foundations of QoL research in adults and children at a...

The Haemophilia Utilization Group Study (HUGS) was created 10 years ago to examine the annual utilization and cost of haemophilia-related healthcare services. Retrospective chart reviews for 336 patients with haemophilia A receiving treatment in one of five comprehensive haemophilia treatment centres (HTCs) during 1995 were completed through interview of the provider. This method provided adequ...

Acquired haemophilia A and severe acquired achalasia are both very rare conditions with unknown aetiology. Haemophilia A is a haemorrhagic disease induced by deficiency or malfunction of coagulation factor VIII. Congenital haemophilia is an inherited disease transmitted by the mother through X-linked inheritance and primarily affects males. However, acquired haemophilia A is a serious, sudden-o...

Abstract Background Increasing survival among people with haemophilia means that more individuals are at risk of developing age-related morbidity. Little is known about morbidity and health-related quality life (HRQoL) in different age groups within a single large population haemophilia. Aim This study aimed to explore the association between increasing comorbidity compare their HRQoL sample ge...

Disease-specific measures of quality of life (QoL) for children with haemophilia are now available for use in clinical studies [Haemophilia, 10, 2004, 9-16]. One of these measures, the Canadian Haemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT), was developed in Canada with emphasis on the perspectives of children [Pediatr Blood Cancer, 47, 2006, 305-11; Haemophilia, 10, 2004, 34-43]....