News

January 9, 2019
Haemophilia gene therapy: we are not alone

The number of trials of cell and gene therapy carried out in the UK has increased by more than one-third in the past year, according to the Cell and Gene Therapy Catapult (https://ct.catapult.org.uk), a London-based development agency that provides support for innovators in the field. The Catapult’s latest statistics show there are 85 clinical trials …

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Risk factors in children and young people with haemophilia

Concern about the possible risk of age-related disorders among people with haemophilia has been tempered by some evidence that many do not appear to be at greater risk than the population without bleeding disorders. Recent evidence from Turkey suggests some young people with haemophilia have cardiovascular risk factors – but no more than other people …

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Untreated bleeds are common

Patient diaries show that 40% of bleeds in people with haemophilia are not treated, according to a study presented at the 60th American Society of Hematology Annual Meeting in San Diego in December 2017. The study was part of the emicizumab development programme carried out by Genentech/Roche. Children and adults with haemophilia A used a …

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Bleeding Disorders and Treatment

Bleeding Disorders 101
Congenital bleeding disorders are characterised by impaired blood clotting, usually due to an inherited deficiency in or abnormal functioning of a clotting factor. There are many types (depending on which clotting factor is affected) but, with three exceptions, they are…
Care of Bleeding Disorder Patients
The primary aim of care is to prevent and treat bleeding with the deficient clotting factor but optimal care requires more than the treatment of acute events. The following recommendations are based on WFH guidelines [WFH, 2013] but the principles…
Achieving Haemostasis
Strategies for the drug treatment of haemophilia and VWD depend on the risk of bleeding. For haemophilia, replacement FVIII is the treatment of choice for prophylaxis and acute treatment of bleeding Desmopressin may be preferred for patients with mild or…

Practice points

Ensuring the Safety of Medicines for Haemophilia
A medicine’s journey from laboratory bench to bedside is a highly regulated process – one that takes years. Trials involve thousands of people who take a compound that may or may not become a medicine and for which the risks…
What is pharmacokinetics?
Pharmacokinetics is the science of what happens to drugs in the body (drug disposition). It uses mathematics to quantify the drug’s journey from absorption to distribution, metabolismand elimination and describes how these processes change over time and in relation to one another.…
EHL factor concentrates
Haemophilia is an X-linked inherited bleeding disorder characterised by reduced levels of Factor VIII or IX levels (haemophilia A and B) respectively [Shrivastava et al, 2013]. In its severe form (FVIII or IX <0.01IU/dl) haemophilia results in recurrent joint and…

Nursing

Haemophilia Nursing
Haemophilia nurses are pivotal members of the haemophilia multidisciplinary team. They support patients and carers within the hospital, the community and at home, encouraging active lives and full participation with peers. As well as providing support, haemophilia nurses educate about…

Physiotherapy

Haemophilia Physiotherapy
Haemophilia is associated with very specific musculoskeletal consequences. Haemophilia physiotherapists are increasingly recognised as the professional experts to deal with these issues. The comprehensive care model of haemophilia is associated with better survival, less risk associated with accidents/surgery and more…

Horizons

Horizons IV (Amsterdam): The next chapter
The fourth Haemnet Horizons focused on the work undertaken since the previous meeting and to agree next steps in achieving the core objectives, to enhance the role of nurses in future haemophilia services across Europe. For this workshop, we were joined…
Horizons I (Amsterdam): Leading Haemophilia Nursing into the Future
Haemnet convened Haemophilia Horizons, a roundtable discussion of the professional and educational issues impacting on the future shape of haemophilia nursing in Europe. There was a strong focus on identifying the opportunities likely to arise in this changing landscape and…
Horizons III (London): Keep Moving On
The third Haemnet Horizons workshop was attended by 19 nurses from 11 countries. The meeting was supported by an educational grant from Sobi and CSL Behring. The purpose of the workshop was to hear about the work undertaken since Berlin…
Horizons II (Berlin): Developing Communities of Practice
Haemnet convened Haemophilia Horizons I in October 2016 and Haemnet Horizons II in July 2017. People with haemophilia and their clinical teams across Europe are responding to an evolving treatment landscape and the nurses at both events are keen to…