Research

A worldwide effort is underway to advance therapeutic options to either slow down or prevent HD. At the same time, there is a significant amount of research looking at ways in which specific symptoms of HD may be treated.

CHDI Foundation Inc.

CHDI is a private, not-for-profit research organisation. They work with an international network of scientists to discover drugs that can be used to either slow the progression or delay the onset of Huntington’s Disease.

EHDN – European HD Network

EHDN is a platform for professionals (health care professionals and scientists) and people affected by HD and their relatives to facilitate working together throughout Europe. The Network provides an infrastructure for large scale clinical trials on HD throughout Europe. It also hosts the largest HD research study to date (REGISTRY, see below).

Where can I find out more about research?

The UCL website has information on HD research and a very useful booklet.

HD lighthouse is an American website which explains the latest HD research in language which is easy to understand.

HDBuzz is a new internet portal that will bring the latest news about Huntington's disease research to the global HD community, written in plain language, by HD scientists. It will provide easy-to-understand digests of scientific papers and conference reports that will be free to read and share.

How can I get involved in research?

REGISTRY is the largest Huntington’s disease (HD) study set up to collect valuable clinical data and biological specimens (blood and urine samples). It will help to understand more about the disease and to work towards finding treatments that can help to either delay or slow down the disease process. It aims to include as many HD-related people as possible. If you would like to know more about REGISTRY or how you can get involved please contact Sara Minster T: 02920 875 197 E: uk@euro-hd.net or visit the website to find out where you can take part in REGISTRY.