Biovalue, hope, and translational science: The public impact of novel clinical trials for the treatment of Huntington's disease

Huntington's disease (HD) is a rare genetic disease, affecting around 5/100,000, which can be inherited from either parent. It is a neurodegenerative disease, causing disruptions to motor function, cognitive impairment, and psychiatric disturbances. Symptoms typically begin around age 45, and death is expected within 20 years. In 1993, a genetic test for HD became available, but it was not until 2018 that a promising treatment was developed, followed by another in 2019. The first trials of these treatments, one drug and one gene therapy, begin in 2020. My research will follow these trials, consulting researchers of treatment development, patient organisations, and patients themselves, to see how and how effectively information about the trial is communicated, and what effect this has on the outcome of the trial. I hope to develop a blueprint for future trials which will optimise communication between 'scientists' and 'the public', to improve future trials for everyone.