Getting involved in research

A worldwide effort is underway to find ways to slow down or prevent Huntington’s disease. At the same time, there is also research focusing on looking at new ways to treat some of its symptoms.

Taking part in research

If you would like to find out more about Huntington’s research or perhaps take part in a study, take a look at the current research trials that are looking for participants.

There are several organisations you can contact:

  • The EHDN (European Huntington’s Disease Network) is a not-for-profit research network for healthcare professionals and scientists as well as families affected by Huntington’s to work together throughout Europe. The Network provides an infrastructure for large scale clinical trials. It also hosts ‘Registry’, the largest Huntington’s research study to date, which has involved over 14,000 participants across 17 European countries.
  • Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have Huntington’s, or are at risk. It aims to collect clinical information about individual people and their health over time. Researchers will use this information to learn more about the disease, understand why and when certain symptoms appear and try to find new treatments for it.
  • The University College London (UCL) website has information on Huntington’s research and a very useful booklet
  • CHDI Foundation Inc. is a privately funded not-for-profit research organisation. It works with an international network of scientists to discover drugs that can be used to either slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.

Organ donation

Some people choose to donate their organs for use by medical science after their death in order to help others. Brain donation is of particular relevance in Huntington’s disease research. Please email info@hda.org.uk to find out more about this.

Find out more

We plan to develop this area of the website over time with more information about some of the latest research into Huntington’s, what scientists think might be possible in future and what it’s like to take part in a study - so watch this space for updates.

In the meantime, if you have any questions about research or taking part in a study, and would like to discuss this, or if you would like more information or independent expert advice, please contact Enroll-HD.