Benchmarking Integrated Care for People Living With Huntington's Disease

Status Recruiting

Clinical Trial 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.

Clinical Trial Description

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: 1. Characterise and classify systems/organisations in England involved in HD care in relation to person-centred integrated care from the perspective of users. 2. Identify areas considered integrated by service users. 3. Identify areas considered fragmented by service users. 4. Map care resources used by people living with HD in England. 5. Identify unmet care needs that need improvement. ;

Study Design

Related Conditions & MeSH terms

Huntington Disease

Clinical Trial Details

NCT number	NCT05828992
Study type	Observational
Source	University of Southampton
Contact	Sandra B Pires, MSc
Phone	07873576074
Email	s.m.bartolomeu-pires@soton.ac.uk
Status	Recruiting
Phase
Start date	February 28, 2023
Completion date	February 29, 2024

View Details

See also
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Recruiting	`NCT05032196` - Study of WVE-003 in Patients With Huntington's Disease	Phase 1/Phase 2
Recruiting	`NCT03599076` - Wearable Sensors for Quantitative Assessment of Motor Impairment in Huntington's Disease Huntington's Disease
Terminated	`NCT04617860` - Open-label Extension Study to Evaluate the Safety and Tolerability of WVE-120102 in Patients With Huntington's Disease	Phase 1/Phase 2
Completed	`NCT05748288` - Development of the Virtual Unified Huntington's Disease Rating Scale
Not yet recruiting	`NCT05360082` - Comparison Between [11C]UCB-J and [18F]SynVest-1 PET in HD.
Not yet recruiting	`NCT04370470` - Development of Assessments for Later Stage HD
Recruiting	`NCT01834053` - Safety and Efficacy of Bone Marrow Derived MNCs for Treatment of Cells for the Treatment of Hunting Tons Chorea.	Phase 1/Phase 2
Completed	`NCT01458470` - A Trial of Memantine as Symptomatic Treatment for Early Huntington Disease	Phase 2
Completed	`NCT01357681` - Effects of EGCG (Epigallocatechin Gallate) in Huntington's Disease (ETON-Study)	Phase 2
Completed	`NCT00980694` - Bioavailability of Ubiquinol in Huntington Disease	Phase 1
Completed	`NCT00146211` - TREND-HD - A Trial of Ethyl-EPA (Miraxion™) in Treating Mild to Moderate Huntington's Disease	Phase 3
Recruiting	`NCT01412125` - Study of Biomarkers That Predict the Evolution of Huntington's Disease	N/A
Completed	`NCT00075140` - Family Health After Predictive Huntington Disease (HD) Testing	Phase 3
Recruiting	`NCT04818060` - Preparing for Prevention of Huntington's Disease (PREVENT-HD)
Active, not recruiting	`NCT04698551` - NIPD on cffDNA for Triplet Repeat Diseases
Not yet recruiting	`NCT04301726` - Efficacy of Deutetrabenazine to Control Symptoms of Dysphagia Associated With HD	Phase 1
Completed	`NCT03421327` - Genetic Risk: Whether, When, and How to Tell Adolescents
Recruiting	`NCT03296176` - Metabolomic Study in Huntington's Disease (METABO-HD)	N/A

Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

Benchmarking Integrated Care for People Living With Huntington's Disease in England — Integrate-HD

Clinical Trial Summary

Clinical Trial Description

Study Design

Related Conditions & MeSH terms