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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.

An article published in the June 2019 edition of the Journal 'Research Involvement and Engagement' reports the findings from work undertaken by the Maudsley Biomedical Research Centre (BRC). The article describes the experience of the authors (Amelia Jewell et al) in setting up a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health research. After a trial period of 12 months, the team conducted an evaluation of the group with both group members and presenters.

HCD announces new research collaboration in support of patients with Sickle Cell Disease.

Antony Martin, Senior Health Economist at HCD economics, recently co-authored a ‘Systematic review of the methods used in economic evaluations of targeted physical activity and sedentary behavior interventions’ which has now been published in Social Science and Medicine.

The top 10 research priorities in bleeding disorders: a James Lind Alliance Priority Setting Partnership

HCD Economics, University of Chester and the Huntington’s Disease Association, are working together to design and launch a socioeconomic study, with an emphasis on informing and facilitating public and patient involvement and engagement (PPIE) in Huntington’s Disease.

April 17, 2019, will mark the 30th World Haemophilia Day!