Rare AutoImmune SElf-management Programme Development

Launched by UNIVERSITY OF THE WEST OF ENGLAND · Oct 14, 2024

Keywords

ClinConnect Summary

This clinical trial is focused on developing a support program for people living with rare autoimmune rheumatic diseases (RAIRDs), such as lupus, systemic vasculitis, inflammatory myositis, systemic sclerosis, ANCA associated vasculitis, and Sjogren syndrome. These conditions can be very serious and affect many parts of the body, making everyday life challenging. The study aims to gather insights from patients through focus groups and surveys to understand what kind of help and information they need to better manage their conditions.

To participate in this trial, individuals must have a diagnosed rare rheumatic condition confirmed by a doctor and be able to give informed consent, meaning they understand the study and agree to take part. The trial is currently looking for participants aged 65 to 74, but all genders are welcome. If you join the study, you can expect to share your experiences and opinions in discussions to help shape a support program that addresses the needs of those living with these challenging diseases.

Gender

ALL

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:
• • -