Examining health services and quality of life in patients with atypical Parkinsonian syndromes
Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes
This study looks at how people with atypical Parkinsonian syndromes, like progressive supranuclear palsy and multiple system atrophy, use health services and how their quality of life is affected by having access to specialist clinics and support services.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 198 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital Southampton NHS Foundation Trust Academic / other |
| Locations | 1 site (Southampton, Hampshire) |
| Trial ID | NCT06645626 on ClinicalTrials.gov |
What this trial studies
This observational study investigates the health care utilization and quality of life of patients diagnosed with progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy. It compares experiences in regions with specialist clinics to those without, aiming to identify which aspects of care are most beneficial. The study also evaluates the impact of multidisciplinary support services on patients and their caregivers, focusing on improving management and quality of life despite the absence of curative treatments.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and over with a diagnosis of progressive supranuclear palsy, corticobasal syndrome, or multiple system atrophy.
Not a fit: Patients with static deficits or those not meeting the inclusion criteria, as well as those with co-morbidities that may hinder participation, may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved care strategies that enhance the quality of life for patients and their families dealing with atypical Parkinsonian syndromes.
How similar studies have performed: While there is limited research specifically on these atypical syndromes, studies on multidisciplinary care models for other neurological conditions have shown positive outcomes.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Patients and their carers must: * Be aged 18 or over * Have capacity to consent at the beginning of their involvement * Have a diagnosis of a neurodegenerative disease which includes progressive supranuclear palsy, corticobasal syndrome and multiple system atrophy but may include other closely related diseases where the presentation is similar, such as Alzheimer's disease where they present with a corticobasal syndrome Exclusion Criteria: * Patients or carers not meeting the inclusion criteria * Patients with static deficits only who do not have a neurodegenerative syndrome. * Patients who the principal investigator feels are not suitable to take part due to co-morbidities or participation in other trials.
Where this trial is running
Southampton, Hampshire
- Wessex Neurological Centre — Southampton, Hampshire, United Kingdom (Recruiting)
Study contacts
- Principal investigator: Boyd CP Ghosh, MBBS — Wessex Neurological Centre
- Study coordinator: Trial administrator Neurodegenerative research team
- Email: srikanth.anugu@uhs.nhs.uk
- Phone: 0044 2381206132
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.