Rare AutoImmune SElf-management Programme Development

Sponsor
University of the West of England
Study ID
NCT06642870
Status
Recruiting
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Conditions

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

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Non-interventional study — OTHER
    The study will consist of focus groups and a large scale patient survey

Study Details

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.

Key Dates

Start date
Oct 31, 2024
Status verified
Oct 2024
Primary completion
Oct 31, 2025
Completion
Apr 30, 2026

Study Design

Enrollment
360 participants (estimated)

Arms

  • Arm: 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.

Primary Outcome Measure

Self-management/efficacy PROM [ Time Frame: In year 1 during the cross-sectional survey ]

Central Contacts

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