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In the 23 June 2022 announcement published by the UK National Institute for Health and Care Excellence (NICE), launching the NICE real-world evidence (RWE) framework (Corporate document ECD9), three key considerations for the conduct of RWE studies are included in the overview.

The European Medicines Agency (EMA), which serves a population of 500 million citizens, has the stated remit of promoting and protecting public health in European Union (EU) member states, as well as the countries in the European Economic Area, by ensuring all medicines available on the EU market are safe, effective and of high quality.

The treatment landscape for the Haemophilia community has broadened in recent years, largely because of the recent advances in genetic treatment and other innovations

The HCD and Prime Access team attended ISPOR (The International Society for Pharmaeconomics and Outcomes Research) ‘in-person’, the first time since the COVID-19 pandemic that the conference returned to an in-person event (with on-line participation still available for those delegates preferring to participate virtually).

Although around 4-5000 people are known to be diagnosed with Fabry Disease in the United States (Mol Genet Metab 2008, 93:112-128), the US National Fabry Foundation proposes that just under 30,000 US citizens could be living, unknowingly, with classic and non-classic Fabry disease (https://www.fabrydisease.org/index.php/about-fabry-disease/how-many-people-have-fabry-disease

Movement disorders are commonly neurological, involving both voluntary and involuntary abnormal, reduced or slowed movement. Ataxia affects the cerebellum, the brain’s coordination centre, causing uncoordinated, clumsy balance and limb movements as well as impaired speech. Dystonia involves sustained involuntary muscle contractions with twisting, repetitive movements. Myoclonus muscle jerks can be lightning-quick, effecting either a single muscle or a whole group of muscles. Chorea is characterized by repetitive, brief, irregular rapid, involuntary movements commonly of the face, mouth, trunk and limbs. HCD Economics has already conducted a large Burden of Illness Study of Huntington’s Chorea, one of the most well know genetic diseases.

In 2017, a study was undertaken to understand the burden of illness for paediatric haemophilia patients, treated with the standard of care available at the time. 785 patients were included in the study, which was conducted across Germany, France, Italy, Spain and the United Kingdom. The study, identified by the acronym CHESS PAEDS raised awareness of the prevalence of problem joints and associated quality of life impairment for these patients.

The High Sheriff of Cheshire Awards for Enterprise are well established within our region and culminate in an important date in the business year. Now in their 15th year, the High Sheriff’s Awards for Enterprise were introduced in 2006 by the then High Sheriff of Cheshire, David Briggs, MBE KStJ. The awards recognise outstanding achievements by enterprises in Cheshire, Halton and Warrington. HCD Economics launched its innovative business model in 2016 from its Daresbury base at the Sci-Tech Innovation Centre, a science and business hub located just outside Warrington.

An evidence based approach = health information, expertise and best practices easily accessible to policy makers and policy influencers’ (adapted from a quote by Vytenis Andriukaitis (WHO Envoy for the European region and former EU Commissioner for Health and Food Safety). HCD Economics has demonstrated a commitment to the generation, analysis and advocacy communication of health information, expertise and best practices that informs and influences policy making. This includes work undertaken in and for the healthcare sector in the EU. Consequently, the company committed to investing in establishing formal EU based organisation alongside the existing UK based HQ.

'A remarkably simple and helpful piece of research' Chris Mullin, Chief Economist, UK Department of Health and Social Care This quote was among a number of twitter postings that commented on the publication of the paper reporting work undertaken by Idaira Rodriguez Santana and collaborators from the Centre from Health Economics (CHE) at University of York.