Rare Autoimmune Self-management Programme Development
Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
SUMMARY
The rare autoimmune rheumatic diseases (RAIRDs) are life-long multi-system diseases that are life or organ threatening. RAIRDs can impair quality of life similar to chronic diseases such as heart failure. The aim of the study is to explore content and structure of a support programme for people with RAIRDs in focus groups and survey meetings.
Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:
• Diagnosis of a rare rheumatic condition made by hospital doctor or secondary care: including lupus, systemic vasculitis, myositis, Sjogren syndrome (participant self-report)
• Ability to give informed consent (with translation support if needed)
Locations
Other Locations
United Kingdom
University of the West of England/ Bristol Royal Infirmary
RECRUITING
Bristol
Contact Information
Primary
Dr J Robson
Jo.Robson@uwe.ac.uk
0044117-342-7418
Backup
Jen Orme
Jen.Orme@uwe.ac.uk
Time Frame
Start Date: 2024-10
Estimated Completion Date: 2026-04
Participants
Target number of participants: 360
Treatments
Study involves a series of focus groups followed by a cross-sectional survey of people with RAIRDs
Systemic lupus erythematosus, systemic vasculitis, inflammatory myositis, systemic sclerosis, Sjogren's syndrome, ANCA-associated vasculitis.
Related Therapeutic Areas
Sponsors
Collaborators: University of Leeds
Leads: University of the West of England