The DOMINO-HD study: What is it and why are we doing it?

DOMINO-HD is a European study funded by the EU Joint Programme for Neurodegenerative Disease. The aim of the study is to investigate the relationship between genetic and lifestyle factors and Huntington’s disease symptom progression.

Written by Dr. Cheney Drew

Research has shown that the rate of decline in people with Huntington’s disease (HD) can be affected by a number of environmental and genetic factors, which includes sleep, diet and exercise.

We are interested in looking at how these factors work with each other to affect disease so that we can find ways of changing them to improve quality of life and disease management in people with HD.

This is the focus of the DOMINO-HD (Multi-DOMain lifestyle targets for Improving progNOsis in people with HD) study.

12-month observational study

DOMINO-HD is a European consortium study funded by the Joint Programme for Neurodegenerative Disease. It is led by Prof Monica Busse in Cardiff (UK) with consortium partners in Dublin (Ireland), Zurich (Switzerland), Ulm (Germany), Burgos (Spain) and Warsaw (Poland).

The aim of the study is to investigate the relationship between genetic and lifestyle factors and HD symptom progression.

To do this we aim to recruit 300-450 participants who are already taking part in Enroll-HD across Europe. Participants will be involved in a 12-month observational study.

There is a baseline assessment at the start (close to or at the same time as the participants annual Enroll-HD visit) where they will be asked questions about their physical activity, diet and sleep habits as well as some other functional assessments of movement and thinking.

The participant will then be given a Fitbit to wear for the whole 12 months and use the Fitbit app on their smartphone regularly to send the recorded data. At the end of the 12 months, there is a final assessment. 

In addition to this observational study, each partner will be running smaller, separate studies, to investigate certain aspects of movement, diet and physical activity and how we can best measure those, in greater detail. One of these studies is described below in more detail.

Understanding Motor and Speech Impairment in Huntington’s Disease

Written by Vitoria Fahed, PhD, Dublin

Vitoria Fahed, PhD Student, UCD, Dublin (Supervisors Professor Madeleine Lowery and Dr Emer Doheny.

How does muscle activity change in Huntington’s disease?

Our project involves analysing muscle signals and speech to better understand Huntington’s disease symptoms. We use wearable sensors placed on the arms and hands during a series of movements to measure the electrical activity of muscle during finely controlled movements. We are also interested in understanding changes in speech. We will be recording participants while they speak to find new ways to analyse the symptoms of HD. Finally, we will combine our muscle activity and speech analysis methods, using wearable sensors to record muscle activity in the neck and face during speech. This research will provide new information on how changes in activity of the arm and hand muscles relate to movement symptoms in people with Huntington’s disease and also how changes in muscle activity in the neck and face influence speech.

This research will provide insight into changes that take place in HD and in the future may help in developing tailored treatments and therapies for HD.

At the end of the study we will be analysing all the information we have collected from the assessments and from Enroll-HD to see how genetic and environmental factors interact to affect disease progression. We will then use this information and work with people with HD, family members and carers to develop a lifestyle intervention aimed at improving disease management and quality of life in people with HD.

We have been working with members of the HD community (patient representatives) across Europe to make sure that this research works for people with HD. Their input ahs been extremely valuable in the design of the study and will continue to be important in the management of the recruitment phase. 

If you are interested in finding out more about DOMINO-HD, or about taking part (either as a study participant or as a patient representative) in the study, please contact us at DOMINOHD@cardiff.ac.uk

Understanding Apathy in Huntington’s Disease

An interview with Carla Collazo, PhD, Burgos