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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.

‘There are going to be some bruises and bleeds along the way, but this is a manageable disorder with the right treatment plan’

Data to be drawn from a descriptive, retrospective, cross sectional burden of illness study design developed by HCD Economics and University of Chester A peer-review manuscript published on 7th January 2021, in the journal ‘Expert Review of Pharmacoeconomics and Outcomes Research’ (impact factor 2.032), reports on the study rationale and protocol of the PICTURE study. PFIC Burden of Illness: Quantifying the global socio-economic burden The PICTURE study will employ a study design developed by HCD Economics and University of Chester in 2014. Founded on the principle of Public and Patient Involvement and Engagement (PPIE), the methodology has generated real-world evidence that can inform and support advocacy for clinical implementation of new therapies including rare diseases.

Jamie O’Hara joined the panel of yesterday’s collaborative webinar (24th Mach 2021), entitled ‘Economic Modelling in Rare Diseases’. The panel involved three leading academic centres, University of Leicester, York and Sheffield, digital research organisation Vitaccess, and leading health economic organisations Source Health Economics and HCD Economics. Jamie participated alongside panellists; Professor Keith Abrams, Professor John Brazier, Dr Jill Carlton, Josie Godfrey, Dr Mark Larkin and Juliet Mumby-Croft.

Combining our commitment to the rare disease community with our established leadership in patient and public engagement led research (PPIE), HCD Economics is announcing a 2021 commitment to identify and undertake research intended to build a repository of real-world evidence (RWE) that can be applied to NMD community evidence-based advocacy initiatives and other programmes. The commitment is to invest and develop partnerships for a RWE programme to support access for NMD patients to new and emerging novel therapies in the treatment and management of NMD.