Guidelines for the assessment and management of Huntington’s disease.

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These clinical guidelines outline evidence-based best practice for the assessment, treatment, and long-term management of Huntington’s disease. They are designed to support healthcare professionals, caregivers, and service providers in delivering high-quality, coordinated care. The guidance covers early-stage assessment, symptom management, multidisciplinary interventions, genetic testing, access to support, and planning for advanced and end-of-life care. It aims to support consistent, person-centred care across England and Wales. 

What the guidelines cover

The recommendations include practical guidance on the following key areas of Huntington’s disease care:

• Cognitive and behavioural changes

• End-of-life care and advanced planning

• Genetics and genetic testing

• Mental health treatment and psychosocial support

• Nutritional assessment and care

• Occupational therapy interventions

• Physiotherapy and mobility support

• Social work and community services

• Speech and language therapy

• Management of motor symptoms and movement disorders

Who these guidelines are for

• Healthcare professionals and social care practitioners in England and Wales working with adults affected by Huntington’s disease

• Commissioners and providers of health and social care services used by people living with Huntington’s disease

• People living with Huntington’s disease, along with their families and carers