An observational study in Huntington Disease, sponsored by University of Southampton. Recruiting at 1 site in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2023-05-19.
Sponsored by University of Southampton · Observational
The survey and full study information can be accessed here: https://southampton.qualtrics.com/jfe/form/SV_8iEedDJZy4xaiI6
The goal of this anonymous survey is to benchmark integrated care from the perspective of service users in adults living with Huntington's Disease, including informal caregivers. The main question it aims to answer is: Is standard of care for people living with HD in England person-centred integrated care from the perspective of service users?
Participants will complete a one-time anonymous survey either online or on paper, according to their preference, that takes an average of 20-30 minutes. Participants can take breaks as needed, picking up the survey from where it was paused.
Huntington's disease (HD) is a rare brain disease that affects people's coordination, thinking and behaviour. It is a hereditary condition, affecting families across generations. Because its complex, it requires different sectors working together. Different surveys can be found in long term neurological conditions indicating care fragmentation and unmet severe needs, but evidence in HD is sparse.
Two surveys were identified covering people's needs in the UK, dated from 2006 and 2010. When looking for models or approaches tested to improve outcomes for people living with HD, no studies were found. This is an underserved population with complex needs and care gaps that remain unaddressed.
Little is known about to what extent people living with HD are experiencing care coordination between services and sectors in England. Integrate-HD aims to find out what good, joined-up care looks like. The study will explore the views and experiences of people living with HD, to identify the changes needed to improve people's care and quality of life.
Integrate-HD is a national survey to benchmark integrated care from the perspective of people living with HD, including informal caregivers.
The study objectives are to:
285 studies on the registry are indexed under Huntington Disease; 49 are open to participants now.
This study's planned enrollment of 60 is below the median of 90 across 78 observational studies indexed under Huntington Disease.
Browse Huntington Disease studies →University of Southampton is the lead sponsor of 121 studies on the registry; 19 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Adults with capacity living in England impacted by Huntington's Disease.
Adults with capacity living in England and fluent in English that are:
Exclusion Criteria:
Survey personalised for people living at risk of developing Huntington's Disease, meaning they have a parent diagnosed with HD but the person themselves have not undertaken a genetic test.
Other: No intervention administered
Survey personalised for people that tested positive in their predictive genetic test but have not been yet diagnosed with clinical HD (manifest HD).
Other: No intervention administered
Survey personalised for people that tested positive in their predictive genetic test and have been diagnosed with clinical HD (manifest HD).
Other: No intervention administered
Survey personalised for people caring for another person diagnosed with HD.
Other: No intervention administered
Survey personalised for people that have cared for another person diagnosed with HD in the last 3 years.
Other: No intervention administered
Survey only to gather people's experiences, opinions and needs.
Level of integration
Using SPSS (version 27) responses will be analysed to explore the level of integration at specific systems or organizations in England to distinguish between "higher" and "lower" integration levels. The Likert-type scale section of the survey will have a scheme of points attributed to generate a key of integration level per domain.
Time frame: 9 months
Plan to share: No — During this study all information collected from participants will be kept confidential. The data gathered through surveys is anonymous and will be stored on a secure database using only survey IDs. Any identifiable information, such as email contact provided at the end of the survey (in order to receive updates on the research or show interest in future research) will be stored separately to survey answers. All data will be stored on a password protected university computer/laptop or in a locked filing cabinet in a secure office in the University. This will only be accessible by the research team. The procedures for handling, processing, storing, and destroying data are compliant with the Data Protection Act 2018.
No publications or documents are linked to this record.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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