Research survey opportunity
Researchers at the University of Leicester have received ethical approval to undertake research via a voluntary survey on the mental health and well-being of people at risk of Huntington’s disease and people who have tested positive for Huntington’s disease.
The researchers have asked Huntingtons Queensland to help promote the survey to our Queensland community.
Huntingtons Queensland is happy to support this research project, and we encourage anyone who is eligible, and feels comfortable participating, to complete the survey.
Participation in the survey
The researchers hope the research gathered will improve the support provided to families with HD. Participants will be asked to complete an online survey of about 70 questions. You will not be personally identifiable in any reports – all participants will be anonymised to protect their privacy.
Questions will relate to demographics and family history of HD, as well as your own psychological well-being and concerns about HD.
An important note
Please note: the survey asks questions related to HD, and the researchers have asked that if you think you may feel any significant discomfort or stress as a result of these questions, that you do not participate in this study. You can also choose to withdraw from the study at any time. If, following participation in this survey, you have questions or feel at all stressed as a result, please contact your General Practitioner.
If you are happy to proceed, you can read more information and complete the survey via this link: https://leicester.onlinesurveys.ac.uk/hd-well-being.