Background Huntington’s disease gene expansion carriers (HDGEC) are at increased risk of suicidal ideation and suicide attempts. Knowledge of high risk stages and other risk factors are important to provide timely identification and treatment.

Methods Demographics and clinical risk factors of suicidal ideation and behaviour in HD in a Dutch and in a European cohort (REGISTRY) are assessed, and compared to other neurodegenerative diseases. Measurement tools for suicidal ideation and suicidal behaviour are discussed.

Results A significant amount of HDGEC experience suicidal ideation (23%) and suicidal behaviour (8%). Suicidal behaviour is more often reported by HDGEC in TFC stages IV/V, with almost 10% of all HDGEC in TFC stage IV/V who commit at least one suicide attempt during their life. A previous suicide attempt and depression are the most important risk factors.

Conclusions Suicidal ideation and suicidal behaviour are major concerns in the care of HDGEC and are significantly associated with the presence of depressive symptoms, and to a lower extent with the presence of irritability.