Living in the premanifest stage of Huntington’s disease.
Research type
Research Study
Full title
Exploring individuals’ experiences of living in the premanifest stage of Huntington’s disease.
IRAS ID
264354
Contact name
Gina Wieringa
Contact email
Sponsor organisation
Lancaster University
Duration of Study in the UK
1 years, 3 months, 1 days
Research summary
Huntington's Disease (HD) is an inherited neurodegenerative disorder which causes significant impairment in movement and thinking. Depression and other mood changes have been reported in individuals who have tested positive to the genetic test for HD but prior to showing motor symptoms (Martinez-Horta et al., 2014), which are necessary to receive a formal diagnosis. This suggests that living at risk of HD is itself very challenging emotionally and this study aims to explore the experience of these individuals. Interviews will be used to explore the process by which individuals adjust to the positive test result and how the individual’s identity changes to include being a gene-positive carrier. The study will explore both positive and negative coping mechanisms which individuals describe in order to get a better understanding of how they come to terms with finding out they will develop HD. The study will also discuss the important clinical implications which arise from getting a better understanding of the process of adjustment; this includes a) long-term support for individuals who test positive to carrying the HD gene mutation but have not yet received a diagnosis and b) sharing important findings about coping strategies which may help individuals to show more positive adjustment responses.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
19/ES/0105
Date of REC Opinion
2 Oct 2019
REC opinion
Further Information Favourable Opinion