RecruitingNCT06642870

Rare AutoImmune SElf-management Programme Development

Rare Autoimmune Self-management Programme Development


Sponsor

University of the West of England

Enrollment

360 participants

Start Date

Oct 1, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

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

Min Age: 18 Years

Inclusion Criteria2

  • 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)

Exclusion Criteria1

  • \-

Interventions

OTHERNon-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

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NCT06642870


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