Over the past year, HDYO has launched two surveys that ask the global community of young people and adults about their feelings, input and opinions about a variety of topics. Our mission for this program is to give updates to our partners and community members about we can all do better when working with the global community. 

Why this matters!

In order to communicate, build support, encourage research participation and more, we need to better understand what's important to the community we all serve.  As a reminder, these are ethics-approved through Monash University and are available for anyone impacted by HD across the globe who is 18+.

Read Full Report

This latest report was created using the latest data from our posters and presentation at EHDN. Here are a few highlights::

Survey One – How are people seeking support and resources. – 425 vetted responses

• Trend of answers has not changed significantly since last reported, even though we have a more diverse group responding.

• Associations and social media continue to be the top choice for how people are receiving any news.

• Research is the top choice for what people are looking for.

• Charts and graphs and formal presentations are still at the bottom of how the community likes to receive information. Written articles, videos and conversations are the top three. Written articles is still a little surprising for sum, but if they are searching for research first over others, find those updates via social media by video or other types of posts, they could be clicking on those links to websites to read more details.

• We are focusing on some key areas to understand what the community needs to help round out this data including South America, India, Pakistan, the MENA region and Eastern Europe (added translations).

Survey Two – Educational and emotional barriers to research - 112 vetted respondents in first 4 months

• There is a lot of information still needing to be analyzed regarding the qualitative questions.

• Quantitative information is not too surprising but may be interesting to further analyze based on demographics to see how some of those tangible needs increase, decrease or are truly universal.

• We also challenged them to see how they overcame barriers because we know that the community needs to continue to problem-solve.

• We are asking as well about educational competencies for different research aspects.

• We continue to push this survey to get an uptick in responses, but we are pleased with 112 vetted respondents in the first 4 months.

Survey Three – Mapping Milestones

• This survey has been submitted for ethics approval, and we are hoping to launch this winter.

• Questions will first look at the different HD milestones and at what age people have experienced those events. After the age selection, appropriate qualitative questions will be prompted to understand what was happening in their lives outside of HD; what support services were available; what support services were used; what would they like to have had; and rating their experiences.

• We are striving to learn how the professional community can best provide interventional support. Additionally, there may be information to help guide what is needed to make young people and adults more equipped for informed decision-making.

Thank you!

We are incredibly grateful for our research committee who help lead this project and to the many individuals who have shared their opinions and feelings so openly.