Before participating in a study, talk to your health care provider and learn about the risks and potential benefits.
People affected by Huntington’s Disease (HD) does not get the health services they need despite the devastating impact of the disease. HD is genetic and fatal, and families are hit hard and suffer.
There is no curative treatment, but patients can be helped to live better lives and manage symptoms if they get access to the right health services and support.
Today, only a minority of people affected by HD get the support and help they need. But there are solutions to this problem – expertise and knowledge exists – we only need to provide better access to all patients.
The Huntington’s Disease Youth Organization (HDYO) in close collaboration with the Monash University in Melbourne, Australia have recently launched an online survey to understand the needs of young people impacted by Huntington’s Disease (HD).
The ultimate goal of this survey is to learn how the HDYO can meet these needs, so that it can support, educate and empower the young people from HD families across the globe. Thus, the results of this study will provide understanding about the needs of people impacted by HD and inform the types of support provided by HDYO.
Survey respondents will be asked to share their experiences about HD, including current needs, which resources they have used, challenges faced in accessing resources, perspectives and experiences with HD research and what types of support can be improved.
The survey will take no more than 10 minutes to complete.
Anyone from the HD community who is at least 18 years and older can participate in this survey. This includes people directly affected by HD (people gene-positive, at-risk or diagnosed with HD) and indirectly affected by HD (people gene negative, care partner, friend or professional).
The survey respondents need to be fluent in English.
This is a global study, so people can participate no matter where they live.
This survey is anonymous and no personal information will be collected or distributed.
Findings from this study may be published in academic journals, presented at academic conferences, and discussed with relevant stakeholders at HDYO.