The result of an extensive study begun in 1979, focusing on the populations of two isolated Venezuelan villages, Barranquitas and Lagunetas, where there was an unusually high prevalence of the disease. Research into the disorder continued steadily through the 20th century, reaching a major breakthrough in 1983 when the US–Venezuela huntington’s disease Collaborative Research Project discovered the approximate location of a causal gene.
If a person decides to be tested, a team of highly trained specialists will be involved, which may include neurologists, genetic counselors, social workers, psychiatrists, and psychologists. This team of professionals helps the at-risk person decide if testing is the right thing to do and carefully prepares the person for a negative, positive, or inconclusive test result.