Beaumont Research Study
The Huntington’s Disease Cognition Study is a research project taking place at Beaumont Hospital, under the supervision of Prof. Niall Pender. It is understood that people living with Huntington's disease experience changes to their cognition (thinking) over time. The purpose of the study is to find out what kind of changes in cognitive ability take place in people living with Huntington's and their family members. By assessing each participant once a year, the team can then observe not only what kind of changes to cognition and emotion takes place but also how they develop over time. The study is also testing out a new tool designed to detect cognitive difficulties early in the course of the illness. This tool has been found effective when used with people with Motor Neuron Disease, and so the team believe that it may also prove useful in assessing people with Huntington's and getting them the support they need earlier on.
The HD Cognition Study will be continuing for the foreseeable future. So far 27 people have taken part (July 2020) , and while recruitment has slowed due to COVID-19 the team are keen to get new people in for appointments as soon as possible. Participation is open to anybody from a family affected by Huntington's, whether or not you have taken the genetic test and including people who tested negative. Spouses and partners are also welcome to attend with affected family members. If you are interested in taking part in this study, or in other Huntington's research taking place in Beaumont Hospital, please email firstname.lastname@example.org or call 01 809 2223.
European Trial Finder
The European Huntington's Association now have a Trial Finder website which shows trial sites all over Europe - https://hdtrialfinder.net/trial-finder/