Background When HD has been diagnosed within a family, the question of life expectancy is often central to the patient and family members. Few studies have investigated ageing in patients with HD, in spite of the importance of this information for the patients and their families. Health professionals should be able to provide information about life expectancy during consultations regarding HD.
Aims The present study investigated age at death with Huntington’s disease.
Methods The present study was based on data from two registries: Centre for Rare Disorders (CRD) have registered data about patients with HD’s age of death from the 1980s, if consent had been given for registration by the patient and family (n = 424). Data were also extracted from the Norwegian Cause of Death Registry (NCDR), including HD patients’ age and reason of death (n = 552). NCDR is mandatory for all reports of death in Norway.
Results According to the data from both registries, 3–5% died before the age of 40, 28–36% died after 70 years of age, while 8–12% died after 80 years of age. Some patients (12) reached the age of 90 years of age. The majority (47–54%) died between 50 and 70 years of age.
Conclusions Data from both registries indicate that a significant number of patients (28–36%) had a life expectancy higher than 70 years of age. Differences between the two registries will be presented and discussed.
- Public Health
- Cause of Death Registry