Rare AutoImmune SElf-management Programme Development

ConditionsSystemic Lupus Erthematosus Systemic Vasculitis Inflammatory Myositis Systemic Sclerosis (SSc)ANCA Associated Vasculitis (AAV)Sjogren Syndrome

Trial statusRecruiting

Trial phaseNot listed

Trial typeObservational

Biological sexAll

Age18+

SponsorUniversity of the West of England

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.

Eligibility criteria

Qualifiers

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)

Disqualifiers

None

Trial design

Treatments tested in this trial

Non-interventional study

Treatment groups

360 Participants

are divided into 1 treatment group

Sponsors and collaborators

University of the West of England

Lead sponsor

University of Leeds

Collaborator

Source ClinicalTrials.gov