RECRUITINGOBSERVATIONAL
Rare AutoImmune SElf-management Programme Development
Rare Autoimmune Self-management Programme Development
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.
Who May Be Eligible (Plain English)
Who May Qualify:
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 willing to sign a consent form (with translation support if needed)
Who Should NOT Join This Trial:
\-
Always talk to your doctor about whether this trial is right for you.
Original Eligibility Criteria
View original clinical language
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:
\-
Treatments Being Tested
OTHER
Non-interventional study
The study will consist of focus groups and a large scale patient survey
Locations (1)
University of the West of England/ Bristol Royal Infirmary
Bristol, United Kingdom