title: The Huntington's Disease Register of Papua New Guinea.
abstract: The discovery of Huntington's chorea in New Britain, Papua New Guinea in 1977 was followed by the establishment of a National Huntington's Disease Register. At present there are 11 choreics and 136 potential choreics registered within 5 kindreds. The disease presents early in Papua New Guinea and the average age of onset in living choreics in New Britain was 21 years. Affected persons here do not as a rule seek medical advice, and an active case detection policy was therefore adopted. The development of a genetic register in an unsophisticated and superstitious community poses special problems. Genetic counselling has so far proved to be ineffective.
mesh_terms: D000328:Adult; D000367:Age Factors; D044383:Black People; D005817:Genetic Counseling; D006801:Humans; D006816:Huntington Disease / Q000453:epidemiology*; D010219:Papua New Guinea; D012042:Registries