Development of a self-management program for rare autoimmune diseases
Rare Autoimmune Self-management Programme Development
University of the West of England · NCT06642870
This study is trying to create a self-management and support program for people with rare autoimmune diseases by gathering feedback from patients to make sure it meets their needs.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 360 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of the West of England (other) |
| Locations | 1 site (Bristol) |
| Trial ID | NCT06642870 on ClinicalTrials.gov |
What this trial studies
This project focuses on creating a self-management and psychological support program for individuals with rare autoimmune rheumatic diseases. It aims to gather insights from patients through focus groups and surveys to ensure the support provided is relevant and comprehensive. The study will involve organizing patient groups in various locations and conducting a UK-wide survey to assess support needs, with materials available in multiple languages to reach a broader audience.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with rare autoimmune rheumatic conditions such as systemic lupus erythematosus, systemic vasculitis, inflammatory myositis, systemic sclerosis, or ANCA-associated vasculitis.
Not a fit: Patients who do not have a diagnosis of a rare autoimmune rheumatic disease or those unable to provide informed consent may not benefit from this study.
Why it matters
Potential benefit: If successful, this program could significantly improve the quality of life for patients with rare autoimmune diseases by providing tailored support and resources.
How similar studies have performed: While this approach is focused on a specific patient population, similar studies have shown success in providing support for chronic conditions, indicating potential for positive outcomes.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Diagnosis of a rare rheumatic condition made by hospital doctor or secondary care: including lupus, systemic vasculitis, myositis, Sjogren syndrome (participant self-report) 2. Ability to give informed consent (with translation support if needed) Exclusion Criteria: \-
Where this trial is running
Bristol
- University of the West of England/ Bristol Royal Infirmary — Bristol, United Kingdom (RECRUITING)
Study contacts
- Principal investigator: Joanna Robson — University of the West of England
- Study coordinator: Dr J Robson
- Email: Jo.Robson@uwe.ac.uk
- Phone: 0044117-342-7418
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.
Conditions: Systemic Lupus Erthematosus, Systemic Vasculitis, Inflammatory Myositis, Systemic Sclerosis, ANCA Associated Vasculitis, Sjogren Syndrome, Rare autoimmune rheumatic diseases, Self-management