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Global research studies

Predict-HDTYPJP9 months ago00 people shared this0 commentspredictFind out more...
What do young people impacted by HD need?TYPJover 1 year ago139139 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 childrenTYPJover 1 year ago9292 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 NewsTYPJPover 1 year ago00 people shared this0 commentshdbuzzFind out more...
Nacho's blogTYPJPover 1 year ago209209 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)TYJover 1 year ago7070 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...
Opinions around genetic testing (UK only)YJ12 months ago4545 people shared this0 commentsOpinions around genetic testing in young adults who are at risk of inheriting Huntington's disease (UK only study)I would like to invite you to take part in a study. Prior to you deciding whether or not to take part in this study, it is important for you to understand why the research is being carried out and what this will involve for you. Please carefully read the information below. What is the study about?Individuals who have the possibility of inheriting Huntington's disease can now be tested to see if they will inherit the disease. Only a small amount of research has looked into how...Find out more...
Kids-HD Study (US only)KTYJ11 months ago8989 people shared this0 commentsWhat is the study? The Kids-HD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Hospitals and Clinics. Our research is about kids who have a parent or a grandparent who has Huntington Disease. Huntington Disease (or HD) is a brain disease that is passed through families, so someone with a parent who has it is at risk of having it someday, too. HD causes parts of the brain to stop working like they should. Usually, this happens when a person is already grown up, but some people might have small problems in their brain for a long...Find out more...