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April 30, 2019
Research to be part of CQC assessment

The Care Quality Commission is to add research to the list of activities by which it assesses NHS Trusts. The initiative is the outcome of deliberations between the National Institute for Health Research (NIHR), the Health Research Authority, the Medicines and Healthcare Products Regulatory Agency and patients’ representatives. The NIHR says there is ‘a growing …

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April 27, 2019
EHL factor VIII designated orphan product and gets regulatory nod

Turoctocog alfa pegol (Esperoct, Novo Nordisk), an extended half-life recombinant factor VIII, has been designated an orphan product and recommended for marketing approval in Europe by the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP). A positive opinion by the CHMP is usually nodded through by the European Commission. Orphan drug status …

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April 18, 2019
HAVEN 4 published

HAVEN 4, the long-awaited clinical trial of treatment with emicizumab in people with haemophilia A who do not have inhibitors, has been published (Lancet Haematol 2019 Apr 16. doi: 10.1016/S2352-3026(19)30054-7). The trial provided the evidence to support extending the licence of emicizumab to include adults without inhibitors. It showed that 4-weeekly subcutaneous injection of emicizumab …

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April 12, 2019
Caregiver burdens

The greatest burdens affecting caregivers of children with haemophilia are economic, such as work days lost, and things that a child cannot do, a new report from the Burden of Bleeds and other determinants on Caregivers (BBC) study has shown (Haemophilia 2019 Apr 11. doi: 10.1111/hae.13684). BBC, a UK study in which Haemnet participated, involved …

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April 9, 2019
Erectile dysfunction common in men with haemophilia

More than one third of men with haemophilia report symptoms associated with erectile dysfunction, a Canadian study has found (Haemophilia 2019;25:283-288). Men with haemophilia A or B who were attending a single treatment centre were invited to complete a questionnaire to detect risk factors for erectile dysfunction and to undergo standard physiological tests. Of 56 …

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April 8, 2019
Consider aquatic exercise for people with haemophilia

Exercising in water could be useful for people with haemophilia but there is a need for more robust evidence of effectiveness, say investigators from India (Complement Ther Clin Pract 2019;34:195-200). Their qualitative review of published trials found four studies of at least moderate quality. The concluded that aquatic exercise offers positive effects compared with no …

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Bleeding disorders and employment

Two recent studies have explored how having a bleeding disorder affects employment. In the Netherlands, a survey of 94 young adults (mean age 24) with an inherited bleeding disorder (74% haemophilia) found that 75% were in paid employment averaging 30 hour per week (Haemophilia 2019 Mar 12. doi: 10.1111/hae.13698). Of these, impairment at work was …

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April 7, 2019
No support for genetic screening to avoid having children with haemophilia

Adults with haemophilia and their families do not support a role for genetic screening so that parents-to-be could avoid having a child with haemophilia, say researchers from the University of Warwick (Mol Genet Genomic Med 2019 Mar 5:e618. doi: 10.1002/mgg3.618). Their survey of 327 adults and families was distributed through the Haemophilia Society during the …

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Nudge to improve adherence?

People will adhere more strongly to their prescribed treatment if they are behaviourally ‘nudged’ – that is, made aware of the consequences of not doing so, say pharmacists (Behavioural Public Policy 2019;https://doi.org/10.1017/bpp.2019.1. Published online: 27 February 2019). In their randomised studyof 16,191 people using the Boots New Medicines Service (which provides advice to people newly …

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April 6, 2019
European study quantifies caregiver burden

The wellbeing of children and young people with haemophilia directly affects the burden carried by caregivers, the latest report from the Burden of Bleeds and other determinants on Caregivers (BBC) study has shown (Haemophilia. 2019 Mar 29. doi: 10.1111/hae.13736). Caregivers from seven EU countries (n=144) completed the HEMOphilia associated CAregiver Burden (HEMOCAB) questionnaire, revealing that …

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