What do young people impacted by HD need?
HDYO has more information about HD available for young people, parents and professionals on our site:
Research study by Michael Orth
The needs of young people impacted by Huntington's disease are very important not only to HDYO, but to Michael Orth, on behalf of the European Huntington's Disease Network's Young Adults working group, as well. The Young Adults working group is doing a research study into what young people impacted by Huntington's disease feel they need or lack in terms of information and support.
What is the study?
The study comes in the form of an online questionnaire which contains a range of questions that focus on what young people impacted by Huntington's disease feel is needed in terms of information and support, what young people consider to be important and what areas they feel are most lacking.
Who can participate?
Any person, under the age of 50, who is either at risk or has tested (positive or negative) and does not currently have symptoms can participate in the study. The survey does not take long to fill out, can be done completely online and each participant is anonymous.
How to participate?
Participating is about as easy as research participation could ever be - all you have to do is click a button. You can fill in the questionnaire online at:
What will the results of the study help towards?
The results of the study will provide a better insight into what young people impacted by Huntington's disease feel is important - what they value - and where support is currently lacking. This will enable professionals to focus on these areas and look at ways to improve support for young people.
There is also discussion of a possible 'youth clinic' for young people impacted by Huntington's disease to use in their region. The data from this study will help towards structuring how these clinics may work.
HDYO is also interested to see what young people feel is important, and what they feel is lacking. The results of this study will enable HDYO to look into providing educational information on the areas that young people feel are lacking, and make them easily accessible for young people via the HDYO site.