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Living at risk of HD - Research study for young people

May 30, 2016

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


Living at risk of HD - Research study for young people

May 30, 2016


This is an easy study for young people to get involved in a research study that will help better understand what young people in HD families need in terms of support. To learn more about the study, read below!

Miranda Lewit-Mendes and her colleagues at the Murdoch Childrens Research Institute, located in Australia, are doing a study to learn the opinions and experiences of young people at risk for HD, regarding the services available to you.

What is the study?

The study comes in the form of an online questionnaire which contains a range of questions that focus on young people’s experiences and how supported they feel.

Who can participate?

Any young person aged 14-25, from around the world, who is impacted by HD (has a parent or grandparent with HD), and can understand English, as that is the only language the survey is available in.

How to participate?

It’s really simple, click the link below and that will take you to the online survey, it takes around 20 minutes to complete. You can fill in the questionnaire online at: https://redcap.mcri.edu.au/surveys/?s=Y4YMA7TLFW

What will the results of the study help towards?

The results, which will be shown of HDYO, should help researchers understand the feelings and experiences of young people in HD families and especially how easy or difficult it is to get support for HD.

Matt Ellison
News Team Reporter