Archives: News

November 6, 2018
Adherence and factor replacement therapy

About one-fifth of adults, young people and children have problems with adherence to factor replacement therapy, according to a systematic review of 16 studies from Canada (Patient Prefer Adherence 2018 Oct 8; doi: 10.2147/PPA.S177624). The analysis, using a framework adapted from research in people with diabetes, found that some studies had focused attention on factors …

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Exercise and haemophilia

The haemophilia community is now past the stage where opinion leaders say exercise is a good thing, with increased activity and sports participation widely promoted for everyone – as appropriate individually, of course. A recent review from Sweden provides a marker of progress in research and clinical thinking to date (Semin Thromb Hemost 2018 Oct …

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rVWF prophylaxis during elective surgery

A multinational trial involving eleven centres, including NHS services in Oxford and London, has shown that recombinant von Willebrand factor (rVWF) is safe and effective as prophylaxis during elective surgery in people with severe von Willebrand’s disease. Fifteen patients undergoing major, minor or oral surgery received rVWF 40-60 IU/kg one hour before surgery and postoperatively …

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Update on trials of EHL Factor IX

The extended half-life (EHL) factors are being introduced with a sometimes bewildering amount of supporting information and advice, not least the ever-growing evidence base of clinical trials. A new review provides a convenient summary of three ongoing trial programmes – BLONG (eftrenonacog alfa, Alprolix), PROLONG-9FP (albutrepenonacog alfa, Idelvion) and PARADIGM (nonacog beta pegol, Refixia) (Ther …

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Management of the foetus and newborn with haemophilia

Managing haemophilia during pregnancy and in a newborn child involves a wide range of health disciplines and this, say Canadian clinicians, plus a lack of high quality information needed to inform decision-making, creates a correspondingly wide variation in clinical practice (Clin Appl Thromb Hemost 2018 Oct 29: doi: 10.1177/1076029618807583). Their recommendations cover everything from preconception …

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Intracranial haemorrhage in children with haemophilia A

A study from China has described the epidemiology and risk factors for intracranial haemorrhage (ICH) in children with haemophilia A (Curr Med Sci 2018;38:875-879). The retrospective study identified 126 children with haemophilia A in one centre in the past four years, of whom 36 received factor VIII prophylaxis. None of those children had ICH but …

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Bleeding risk in patients with haemophilia taking antithrombotic therapy

Drug therapy to reduce the risk of thrombosis, such as antiplatelet therapy with aspirin or anticoagulant therapy, is an important component of preventing cardiovascular events in people at increased risk. There is a lack of information about how such treatment might affect the risk of bleeding in people with haemophilia, who can now expect to …

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Climbing Everest with haemophilia

In 2017, Chris Bombardier became the first person with severe haemophilia B to ascend Everest. His conquest is now recounted in a film, sponsored by Octapharm and coming to UK cinemas in 2019. This was not a one-off event: Chris is one of only 400 or so people ever to have climbed the highest peaks …

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Haemophilia Society highlights challenges at diagnosis

Families facing a diagnosis of haemophilia for the first time should be reassured they are not alone, the Haemophilia Society says in the introduction to its new report, Initial Diagnosis: Understanding the Experience. Drawing on interviews with parents whose children have been diagnosed with haemophilia, the report provides insight into their feelings and experiences and …

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June 23, 2018
NHS will pay for treatment with emicizumab

NHS England has announced that the NHS will pay for treatment with emicizumab and susoctocog alfa, among several innovative therapies assessed by its Clinical Priorities Advisory Group. Emicizumab is among the new interventions considered to have ‘a very low overall budget impact or were cost neutral or cost saving’. It will now be routinely commissioned …

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