Plain-English translation of NCT06642870 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This research is designed to understand what kinds of support and help people with rare autoimmune diseases really need and want. Researchers are gathering feedback directly from patients and healthcare teams across the UK to create self-management and psychological support programs that actually work for people living with conditions like lupus, vasculitis, scleroderma, myositis, and Sjögren's syndrome.
Many people with rare autoimmune diseases struggle with the emotional and practical challenges of living with a serious condition, but most NHS rheumatology departments don't currently offer psychological or self-management support. This research is trying to fill that gap by understanding what support patients need most and how to deliver it in the real world.
You likely qualify if…
You likely don't qualify if…
You would participate in either a focus group discussion (meeting with others who have similar conditions to share your experiences) or complete a survey about your support needs. The survey will be available online or on paper, and can be translated into multiple languages. Your involvement helps researchers understand what kind of support would be most helpful for people with your condition.
AI-generated summary from trial data · Jun 2, 2026 · Not medical advice
United Kingdom
University of the West of England
Collaborators
University of Leeds
Enrollment target
~360 participants
Started
October 2024
Primary completion
October 2025
This trial's estimated completion date has passed — the record may not be fully up to date.
Age range
18 Years and older
Last updated on clinicaltrials.gov in October 2024.
Reach out to the team running this trial. Response times vary — some teams are faster than others.
Central contact
Dr J Robson
University of the West of England
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first — no email needed to get started.