Introduction Huntington’s disease (HD) services throughout the UK have grown organically and are embedded in different healthcare specialties: psychiatry, neurology and genetics. There is currently no picture of how these services are delivered nationally. This project was undertaken to map the current organisation, resources and funding of HD services and explore future resource needs.

Methods This was a mixed methodology study. Existing HD services were identified using desktop research and data was collected on each service via a cross-sectional online survey and follow-up web-assisted semi-structured interviews led by the HDA or SHA.

Results 31 specialist HD services were identified: 18 in England, 10 in Scotland, 2 in Wales, and 1 in N Ireland. The survey included 27 out of 31 (four centres did not respond). Over half of specialist services were led by a mental health trust (n=7) or tertiary referral hospital (n=7), and the majority had a neurologist (n=10) or psychiatrist (n=8) as clinical lead.

The mean number of patients managed by each service was 173, ranging from 5 to 950. On average 18% were pre-manifest, 24% stage 1-2, 32% stage 3 and 26% stage 4-5.

This project is funded solely by Roche Products Ltd.