Rare AutoImmune SElf-management Programme Development
Recruiting
Observational Study
Systemic Lupus Erthematosus
Systemic Vasculitis
Inflammatory Myositis
Systemic Sclerosis (SSc)
ANCA Associated Vasculitis (AAV)
Sjogren Syndrome
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 18 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 360 (estimated)
- Sponsor
- University of the West of England · Other
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About This Trial
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.
Trial Locations
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Eligibility 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:
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Contacts