January 2020

HCD real world and medical affairs team report from ASH (American Society of Haematology 2019)

HCD’s Hayley Hubberstey, Real World Evidence Manager and Dr Harpal Dhillon, Global Medical Affairs Director attended ASH in December 2019 for the shared objective to learn the latest in terms of medical advances/understanding in HCD’s research areas of Sickle Cell Disease and Haemophilia and to identify 2020 research areas, that would benefit from the patient empowered methodology HCD has pioneered, alongside a need in the future research area to unearth evidence of burden of illness and provide expertise pro bono, in support of patient and political advocacy.
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November 2019

Valuable news resource for researchers in Gaucher disease

The International Gaucher Alliance (IGA) publishes a regular monthly newsletter. In the November 2019 edition reports are filed from all parts of the IGA organisation, including established and emerging National members of the Gaucher community such as Belgium, Albania, Pakistan and the United States.
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September 2019

Real World Evidence (RWE) – can inform and empower!

In Sickle Cell Disease (SCD), RWE (Real world evidence) is important and useful for individual patients and families. John James, CEO of the Sickle Cell Society (SCS), speaks to HCD Economics about our forthcoming RWE research partnership.
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August 2019

Empowered patients and medicines access: meaningful participation (a case study)

Writing in the Sage Journal, Medicine Access@Point of Care, Jasmine Barman-Aksözen reports on a personal case study that highlights the importance of patient empowerment and reports on what can be achieved in terms of access to treatment. The full article, published in August 2019, is available (link below), this news item focuses on the ‘take home messages’, summarised within the paper. HCD Economics completely endorses the criteria for meaningful participation as outlined in the paper.
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August 2019

Making a difference and giving Huntington’s Disease patients and their families a real voice

Cath Stanley, Chief Executive of The Huntington’s Disease Association (HDA), speaks to Hayley from the HCD Huntington’s Disease study team about wanting to make a difference for patients and families affected by Huntington’s Disease and how the HDA partnership with HCD and University of Chester on the forthcoming Real World Evidence (Burden of Illness) study will work in practice and how the evidence drawn from the study will be a part of making that difference.
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