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Global research studies

Enroll-HDTYPJP16151615 people shared this0 commentsEnroll-HD: A study the whole family can participate in What is Enroll-HD?When it comes to HD research studies Enroll-HD is perhaps one of the most significant studies there will be. Enroll-HD, in simple terms, is an observational study, which means there are no drugs involved, it is purely a study to ‘observe’ and gain knowledge about how HD works. To do this participants are only required to attend one appointment each year which lasts about an hour. During this time a number of tests are done and then the results of which are put in to a massive confidential database to be analysed. This...Find out more...
Living at risk of HD – Research StudyTYJ810810 people shared this0 commentsResearch study by Miranda Lewit-MendesMiranda and her colleagues at the Murdoch Childrens Research Institute, located in Australia, are doing a study to learn the opinions and experiences of young people at risk for HD, regarding the services available to you.What is the study?The study comes in the form of an online questionnaire which contains a range of questions that focus on young people’s experiences and how supported they feel. Who can participate?Any young person aged 14-25, from around the world, who is impacted by HD (has a parent or grandparent with HD), and can understand...Find out more...
Predict-HDTYPJP00 people shared this0 commentspredictFind out more...
Talking to parentsTYPF5656 people shared this0 commentsDear Parents and Guardians,My name is Dr. Bonnie Hennig-Trestman. I am a clinical researcher, therapist, and Board of Director member with the Huntington’s Disease Youth Organization (HDYO). I have been chosen by the Huntington’s Study Group (HSG) to determine when and how families talk to their kids about Huntington’s Disease (HD). I also plan to ask parents or guardians what resources they feel would be helpful to them when they discuss HD with their children. This information is important because the results of this study are ultimately intended to provide parents and guardians with the...Find out more...

Research updates

HDBuzz Research NewsTYPJP00 people shared this0 commentshdbuzzFind out more...
Nacho's blogTYPJP51655165 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-HD Study (US only)KTYJ500500 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...
HD-YAS Study (UK only)TYJ5555 people shared this0 comments Professor Sarah Tabrizi’s team at University College London are conducting a very important research study called the Huntington’s Disease Young Adult Study (HD-YAS). The study aims to identify the earliest point at which subtle HD-related changes may be found, and therefore, the earliest time when future treatments can be given to prevent HD. The study will include 120 young adults between the ages of 18-40. Half of this group will be people who carry the gene and the other half will be people who don’t carry the gene, such as family members, partners, friends or people who have tested...Find out more...