Select your wallpaper: Select your wallpaper: Sign up to save your choice Close
Podcast Forum Store

Global research studies

Predict-HD studyTYPJP4 months ago22 people shared this0 commentsWhat is the PREDICT-HD study? The PREDICT-HD study is one of the most important research studies currently being undertaken in Huntington's disease research. At the moment, people are typically diagnosed with Huntington's disease once they show recognisable motor symptoms (such as involuntary movements), but doctors and Huntington's disease family members believe that the disease starts to effect people way before they are officially diagnosed. The PREDICT-HD study was set up to find out just how much earlier in life Huntington's disease effects people, and what impact that has on a person....Find out more...
What do young people impacted by HD need?TYPJ4 months ago18 people shared this0 commentsResearch 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...Find out more...
Telling the childrenTYPJ3 months ago21 people shared this0 commentsDisclosure challenges and support needs of parents with children at risk for Huntington’s diseaseTwo genetic counsellors in Canada are interested in finding out what kind of support parents access when looking to disclose information about Huntington’s disease to at risk children, and what challenges parents face when disclosing this information. What is the study?This research will study the challenges that parents face in telling their children about their own risk for Huntington’s disease as well as identifying support resources used and found helpful for parents.Who can participate?You...Find out more...

Research updates

HDBuzz Research NewsTYPJP3 months ago0 people shared this0 commentshdbuzzFind out more...
Nacho's blogTYPJP5 months ago24 people shared this0 commentsWelcome to Nacho's blog! With all the great strides being taken in Huntington’s disease research, Nacho provides a unique insight into how the search for an effective treatment (cure) for Huntington’s disease is progressing. Nacho is a neuroscientist who works for CHDI – an organisation that has been behind the huge increase in funds for Huntington’s disease research over recent years. With his inside knowledge, HDYO highly recommends taking a look at what Nacho has to say on his blog below.http://hdscienceblog.com/Find out more...

Local research studies

Kids and Teens who help a parent with HD (US only)TYJ3 months ago16 people shared this0 commentsMelinda Kavanaugh, a Social Worker in the USA, wants to know about the experiences of young people who care for their parent who has Huntington's disease. What is the study?This study is designed to find out what services and supports available to young people who care for a parent with Huntington's disease and to explore how young people feel about being carers for their parent and what young people feel would help them while in this situation. In the words of Melinda herself: "As a social worker with families coping with HD for many years, I often saw kids helping their parents, but knew...Find out more...