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Results from the first CHESS study were published in July 2017 (O’Hara et al. Orphanet Journal of Rare Diseases (2017) 12:106). The study investigated the burden of illness (BOI) for haemophilia patients and has been instrumental as a source of health economic evidence in advocating for access for these patients to new genetic advances in treatment.

‘Socioeconomic evidence – a human aspect that science alone lacks’ Tara Kearns (Vice President and Co-Founder, PFIC* Advocacy and Resource Network) ‘research is absolutely where my passion lies, as I know this will create the most change!’ Melanie Karakaidos (Director of Global Advocacy and Outreach, PFIC* Advocacy and Resource Network)

As a timely follow up to our June 2021 news article by George Morgan, ‘Preference research – the evidence based approach to quantifying the patient voice’, HCD Economics is able to report publication of a new preference research study, undertaken by George and co-authors, under the lead authorship of Michelle Witkop, Head of Research at the United States National Hemophilia Foundation. The study is published in Haemophilia, the official journal of the World Federation of Hemophilia.

From September 2021, NHS digital will be launching changes to the way the Hospital Episode Statistics (HES) data set will be processed. These improvements are intended to provide data users with the tools to process larger volumes of data and manage incoming data to ensure that it is accurate, useful and secure.

CHESS LATAM is an expanding research programme investigating the burden of illness (BOI) of haemophilia patients in Latin America. Building on the contribution of the CHESS (THE COST OF HAEMOPHILIA IN EUROPE & US: A SOCIOECONOMIC SURVEY) real world evidence investigation into BOI for haemophilia patients in Europe and United States, the CHESS LATAM research initiative employs the highly respected HCD Economics BOI methodology to uncover understanding of the BOI for haemophilia patients across the Latin American continent. This replication of an EU/US initiative is similar to the Latin American application of the Principles of Haemophilia Care for Europe (PHCE) in other regions of the world, undertaken in Latin America and published by Apsara Boadas in 2018.

The EHA was established in 1986. The organisation is dedicated to improving the life of those affected by Huntington’s Disease (HD). The EHA is an umbrella organization, consisting of 43 National Huntington Associations and more than 30.000 individual members – and EHA continues to grow.

By George Morgan, HCD Economics

A new study, undertaken with the engagement and participation of Huntington’s Disease (HD) patients and the wider HD community (Patient organisation and leading HD experts), has recently confirmed data lock. The database of the Huntington’s Disease Burden of Illness Study (HDBOI) is available now for interrogation and analysis. Subscribers to the data can draw upon physician and patient reported data for health economic and disease understanding analysis.

Jamie O’Hara, CEO of HCD Economics, is delighted to announce the appointment of Jo Pitt, to the new role in the company of ‘Health and Wellbeing’ officer.

The International Journal of Environmental Research and Public Health (impact factor [2019] 2.89, Editor Paul B. Tchounwou) recently published a commentary entitled ‘Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal’. HCD Economics are encouraged that the paper seeks to show how cost or burden of illness studies informs effective decision making on the allocation of healthcare resources towards the management of rare diseases. This finding is a core belief for HCD Economics and underwrites our research philosophy in partnership with patient advocates and the University of Chester.