This project, which is jointly funded by the Chief Scientist Office (CSO) and the RS McDonald Trust, aims to address two issues of fundamental importance to understanding and improving the quality of care for people with HD. Firstly it will identify, explore and interpret key variations in care organisation and delivery in the early stages of HD. Secondly it will identify a set of core outcomes to support consistent evaluation of different care approached in early HD. The research objectives are to: A) Identify, explore and compare structures, processes and strategies underpinning the organisation and delivery of care services in early stage HD; and B) Identify and develop a ‘core outcome set’ (COS) guided by the internationally agreed COMET framework.
Data Collection - Ongoing