Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.
Our third and final daily report from the European Huntington’s Disease Network 2012 Meeting in Stockholm. Video of both EuroBuzz evening sessions will be available to watch on HDBuzz.net next week.
10:47 - Welcome to day 3 of the European HD Meeting in Stockholm
10:51 - Ed: Rachael Scahill (UCL, London) and Andrea Varrone (Stockholm) present an overview of brain imaging techniques help us understand HD. Brain scans have advanced dramatically over the next decade. They are still telling us new and surprising things about HD
10:54 - Ed: Sarah Tabrizi (UCL, London) is head of the TRACK-HD study which has told us lots about early HD and helps design forthcoming trials. Despite detectable brain shrinkage before disease onset, people remain healthy - this means there is a lot to rescue
11:04 - Jeff: People have lots of problems with thinking and memory in HD - but this can be hard to measure in a clinic. Julie Stout (Monash, Melbourne) is looking for the best tests to use for HD patients to study “cognitive” function. Stout says that the way that tests used during trials are given to HD patients makes a big difference - this helps better plan future drug trials.
11:18 - Jeff: Anne-Catherine Bachoud-Levi (Henri-Mondor, Créteil) is also interested in understanding how thinking changes in HD. She’s studying different ways of questioning HD patients to understand how their cognitive abilities change over time. Picking which tests to use is really important - more sensitive tests allow us to run drug trials with less people, and a higher chance of success. Bachoud-Levi is working on new tasks, including things as simple as asking HD patients to do mental arithmetic.
11:26 - Jeff: Olivia Handley (UCL, London) is describing the REGISTRY database of HD patients in Europe - she’s the project manager. REGISTRY is a huge resource - there are 9,982 HD patients and control subjects, all of whom are volunteering information about themselves for study by scientists. The REGISTRY database let’s scientists ask questions about how HD develops - Handley reports that 25 studies have already been completed.
“ENROLL-HD will be open to every member of an HD family who wants to be engaged in research ”
11:31 - Jeff: The REGISTRY study is being merged with COHORT-HD, another “observational” study of HD patients into a single large study called “ENROLL-HD”. ENROLL-HD will be open to every member of an HD family who wants to be engaged in research. There’ll be 60 sites in North America, 14 sites in Latin America, 146 sites in Europe, 2 sites in Asia and 7 sites in Australia/New Zealand. The ENROLL database will allow any qualified HD researcher to ask questions about HD, without revealing the identity of the participants.
11:55 - Jeff: Now taking the stage for the final talk of the EHDN meeting is Charle Sabine, HD family member and activist to provide his personal view of HD research.
12:42 - The meeting has now finished - great exchange of ideas and excitement. Look out for EuroBuzz videos soon.