Newsletter from the European Huntington’s Disease Network

The European Huntington’s Disease Network (EHDN) is a nonprofit research network. EHDN forms a collaborative platform of scientists, clinicians, Huntington’s disease (HD) patients and families. The network aims to improve clinical care in HD, advance research, make clinical trials better and easier to conduct. Here is the EHDN November 2016 newsletter.


Here is the newsletter’s table of content:

In the newsletter you can read about the progress of EHDN in plain language at page 1-2.

Further, you can read about clinical trials at page 3. Monica Busse reports about how an exercise regime improves total motor score in mid-stage HD patients.  You can also read about the clinical trial pride-HD – which studies how medications might slow down the impairment of total functional capacity in HD patients. There are also other ongoing trials which you can read about at page 3-4.

At page 5 you can find an article about Enroll-HD: what the study consist of, it aims and currently updates.

At page 6-7 (“Promising in preclinic”), you can read about a promising HD-target: three main clusters of genes that modify the age at onset of HD. These gene clusters might be an opening window for slowing down or even stop the progression of HD.

Tapping into brain plasticity” at page 8, addresses the “wonders” of the human brain. The brain possesses an exceptional capacity to compensate for damages. Researchers have therefore been interested in this capacity – in the hope of slowing, stopping or even reversing the damages that HD makes in the brain.

Further, it turns out the HD story is much more complicated than first anticipated. Even though the DNA-sequence that causes the disease was identified in 1993, the exact nature of the biological causes – or the pathogen – remains mysterious. You can read more about it at page 9.

At page 10 you find description of animal studies in the search for an HD-cure. How can these animal brains – a mouse, a sheep and a pig’s – be translated into a human brain? Read about it in the article “My family and other animals”.

Further, one important aspect of studies and clinical trials are the measurements. Bringing new therapies to market is only possible if tools exist for accurately testing their efficacy. Hence the importance of biomarkers. Read about “The science of measurement” at page 11-12.

Read about who was elected as the executive committee (EC) and the scientific and bioethics advisory committee (SBAC) in “Business meeting” at page 13.

At page 14, “Dates for your diary”, you will find important dates for 2016/2017, with EHDN meetings in the United States, Belgium and Malta.


If you want to know more about EHDN, you can read about the research network here.