Benchmarking Integrated Care for People Living With Huntington's Disease in England
Integrate-HD
1 other identifier
observational
60
1 country
1
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
Started Feb 2023
Shorter than P25 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
February 28, 2023
CompletedFirst Submitted
Initial submission to the registry
April 12, 2023
CompletedFirst Posted
Study publicly available on registry
April 25, 2023
CompletedPrimary Completion
Last participant's last visit for primary outcome
November 30, 2023
CompletedStudy Completion
Last participant's last visit for all outcomes
February 29, 2024
CompletedMay 19, 2023
May 1, 2023
9 months
April 12, 2023
May 18, 2023
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
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.
9 months
Study Arms (5)
Person at risk
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.
Person HD gene positive asymptomatic
Survey personalised for people that tested positive in their predictive genetic test but have not been yet diagnosed with clinical HD (manifest HD).
Person HD gene positive symptomatic
Survey personalised for people that tested positive in their predictive genetic test and have been diagnosed with clinical HD (manifest HD).
Informal caregiver
Survey personalised for people caring for another person diagnosed with HD.
Former informal caregiver
Survey personalised for people that have cared for another person diagnosed with HD in the last 3 years.
Interventions
Survey only to gather people's experiences, opinions and needs.
Eligibility Criteria
Adults with capacity living in England impacted by Huntington's Disease.
You may qualify if:
- Adults with capacity living in England and fluent in English that are:
- A person at risk of HD (where at least one parent is diagnosed with HD, therefore their offspring has 50% chance of developing the disease);
- A person diagnosed with HD symptomatic or asymptomatic (after undergoing gene testing and having a positive result);
- An informal caregiver supporting someone living with HD;
- A former informal caregiver with experience of supporting someone living with HD in the last 3 years.
You may not qualify if:
- Below 18 years old;
- Not fluent in English;
- A person without capacity.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
University of Southampton
Southampton, Hampshire, SO17 1BJ, United Kingdom
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Sandra B Pires, MSc
University of Southampton
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- CASE ONLY
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
April 12, 2023
First Posted
April 25, 2023
Study Start
February 28, 2023
Primary Completion
November 30, 2023
Study Completion
February 29, 2024
Last Updated
May 19, 2023
Record last verified: 2023-05
Data Sharing
- IPD Sharing
- Will not share
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.