Finding out if you have symptoms of HD

Examples of Support

Diagnostic testing

Neurological Assessment

Emotional support and counselling

Accurate information about HD

Post-test follow up and referral on to other support services

Process and timescale for testing

Integrated Multi Agency Arrangements, Referral Pathways and Resources

Clients without symptoms but with a family history of HD, and who wish to consider predictive testing, should be referred to the local genetics service. All referrals to local Dept. of Clinical Genetics  can be made by any health & social care professional, most commonly GPHD SpecialistHD Clinical Lead, Psychiatry & Specialist Youth Advisors. Clients describing a family history of the disease can also self-refer to Clinical Genetics if preferred.

Clients with symptoms suggestive of HD, and a known family history of HD, should be referred to the HD Specialist Service

Clients with symptoms which could be due to HD, but with no known family history of HD, can be offered a diagnostic genetic test directly by neurology clinics. Prior to testing clients must be informed that they are being tested for a hereditary condition, and that there will be implications for them and their wider family if they test positive. If HD is confirmed, such clients should be referred to the HD Clinic.

SCI Gateway should clearly identify HD Clinical Leads

It must not be assumed that clients with a family history of HD choosing not to take the test, or receiving a negative result, require no further support. Access to further support and advice – such as that provided by Clinical Genetics, HD Specialist, Specialist Youth Advisor, Clinical Health Psychology / Neuropsychology and talking therapy services – should be offered.


The International Protocol for Testing should be followed unless a clinical decision has been made to follow a local alternative.

All appointments should meet the treatment time guarantee and referral standards of individual services used.


People with symptoms of HD who choose to pursue a diagnosis receive one promptly and they, and their families, are connected to appropriate support.

National Care Framework for Huntington's Disease