DOMINO-HD
Research type
Research Study
Full title
Multi-Domain Lifestyle Targets for Improving Prognosis in Huntington’s Disease
IRAS ID
274100
Contact name
Monica Busse-Morris
Contact email
Sponsor organisation
Cardiff University, Research and Innovation Services
Duration of Study in the UK
2 years, 9 months, 1 days
Research summary
Research Summary
DOMINO-HD is a large Cardiff University led consortium study funded through the EU joint programme-Neurodegenerative Disease, involving 7 partners. This research will help to understand Huntington’s disease by monitoring how the disease appears and changes over time in people with HD, linking new insights into behaviour and lifestyle to clinical assessments of HD and genetic risk. In Phase 1 of DOMINO-HD, Cardiff will be working with Dublin partners to demonstrate feasibility of a digital sensing platform capable of providing meaningful and user acceptable objective monitoring of physical activity, sleep and nutrition in Huntington’s disease. This will also involve the development of sensitive and objective methods to assess the progress of HD within a clinical environment. \nIn Phase 2, Cardiff will be one of five Clinical Sites across Europe that will undertake a 12-month observational study in a target of 60 people with HD implementing the developed digital platform and objective clinical assessment methods from Phase 1. Participants across all Clinical Sites will be recruited through Enroll-HD, a global research platform that has at its core a worldwide observational study for Huntington’s disease families (https://www.enroll-hd.org/learn/about-this-study/). This will allow DOMINO-HD research data to be combined with genomic data and comprehensive clinical assessment data captured via Enroll-HD. Cardiff will gain access to the observational data collected at all Clinical Sites (n=300) which will be combined and used to inform predictive outcome modelling and intervention development.\n
Summary of Results
The DOMINO-HD study was designed to see if we could study lifestyle factors (sleep, physical activity/ exercise and diet) and how they affect Huntington's disease (HD). We also attempted to combine detailed genetic information with these modifiable factors.
We ran a 12-month study where we included 97 participants with HD, from four sites across Europe. We developed methods for combining digital data on lifestyle from wearable trackers and from questionnaires that HD participants completed. This allowed us to record activity measurement over a long period of time. All the people we included also take part in a world-wide study called Enroll-HD where each year they undergo tests to measure certain aspects of living with HD. We used the Enroll-HD data to tell us about the disease status of the DOMINO-HD participants, which we then linked to the data we collected about lifestyle. This approach let us explore how lifestyle may affect the severity of HD symptoms. Alongside this main study we also ran some smaller studies to better understand how well wearable activity trackers record physical activity, sleep and energy used in people with HD.
The final part of the DOMINO-HD study was aimed at understanding how we may be able to create lifestyle interventions for people with HD. We asked medical professionals, researchers and people with HD and their family members what they thought the most important issues were in doing this.
Our results show that it is possible to run a long-term study of lifestyle in people with HD; a very large number of participants remained in the study until the end and we were able to collect most of the data we wanted to, including the Enroll-HD data and digital data from activity trackers. We were able to demonstrate that commercial activity trackers can reliably measure aspects of lifestyle in people with HD and we developed new methods for assessing speech problems and walking in people with HD.
Lastly, the work we carried out with members of the HD community in relation to lifestyle intervention design, highlighted the need for flexibility and personalisation in the development of interventions for people with HD. The degree of personalisation and flexibility would be dependent on disease stage, technological ability and personal preference.
The insights that DOMINO-HD have provided for the measurement and study of lifestyle in HD can be used to develop and test lifestyle interventions for improving the progression and general quality of life for people with HD. Additionally, the methods we have validated in this work, particularly the use of digital data has broad applications across clinical research in HD.
REC name
Wales REC 3
REC reference
19/WA/0329
Date of REC Opinion
13 Jan 2020
REC opinion
Further Information Favourable Opinion